Tag Archives: rare

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-275">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-274">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-273">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-272">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-271">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-270">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-269">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-268">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-267">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-266">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-265">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-264">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-263">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-262">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-259">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-258">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-256">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-255">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-254">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-252">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-251">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-249">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-248">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-247">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-245">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-244">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-243">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-242">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-239">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-238">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-237">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-236">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-235">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-234">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-233">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-232">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-225">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-224">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-222">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-221">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-220">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-219">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-218">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-214">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-211">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-210">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-209">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-208">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-207">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-206">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-205">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-204">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-203">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-202">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-201">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-200">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-199">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-198">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-197">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-196">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-194">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-193">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-191">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-190">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-189">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-188">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-187">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-186">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-185">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-184">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-182">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-181">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-180">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-178">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-177">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-176">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-175">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-174">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-173">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-172">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-171">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-170">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-169">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-168">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-167">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-166">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-162">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-160">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-159">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-158">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-157">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-156">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-155">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-154">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-152">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-151">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-150">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-149">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-148">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-147">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-146">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-145">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-144">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-143">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-142">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-141">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-140">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-139">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-138">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-137">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-136">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-135">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-134">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-133">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-132">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-131">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-130">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-129">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-128">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-127">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-126">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-125">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-124">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-123">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-121">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-117">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-116">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-101">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-100">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-99">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-98">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-97">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-96">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-95">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-94">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-93">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-92">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-87">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-86">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-85">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-84">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-78">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-77">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-76">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-49">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-38">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-34">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-33">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-30">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-29">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-28">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-25">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-19">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-5">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-4">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-3">div class="row">
In May 2015, Global Genes launched their 2nd annual Cox Prize for Rare Compassion contest which encourages 1st and 2nd year medical students to get to know a rare family and write an essay based on their experiences. If the medical student does not have a rare family to work with, Global Genes will match them with a rare family in their local area.

In just a few weeks, they have had requests from over 90 medical students for help in being matched with a rare family! These students represent dozens of medical schools all over the U.S. as well as Canada and the U.K.

Global Genes is asking our help in finding rare families we can match for this program. This is a wonderful way to create awareness for your disorder within the medical education community and possibly create a relationship that could shape the med student’s future career focus. The IPPF would love to have pemphigus and pemphigoid families represented in this fantastic program! What a great way to help spread awareness to the future of the medical community about pemphigus and pemphigoid! To let Global Genes know that you are interested in being a rare family for this program please email Carrie Ostrea carrieo@globalgenes.org

Please help us spread the word about their med student matching program by going to http://globalgenes.org/cox-prize-family to see what locations are currently asking for requests. This list gets updated weekly, so please check back often to see what new cities are requested.

Thank you so much for your support! If you have any questions, please do not hesitate to ask.

Carrie Ostrea
Advocacy Director / Parent Advocate
Global Genes – Allies in Rare Disease
http://www.globalgenes.org
(949) 248-RARE x110

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-275">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-274">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-273">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-272">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-271">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-270">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-269">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-268">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-267">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-266">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-265">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-264">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-263">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-262">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-259">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-258">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-256">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-255">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-254">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-252">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-251">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-249">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-248">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-247">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-245">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-244">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-243">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-242">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-239">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-238">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-237">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-236">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-235">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-234">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-233">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-232">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-225">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-224">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-222">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-221">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-220">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-219">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-218">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-214">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-211">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-210">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-209">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-208">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-207">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-206">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-205">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-204">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-203">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-202">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-201">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-200">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-199">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-198">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-197">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-196">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-194">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-193">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-191">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-190">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-189">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-188">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-187">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-186">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-185">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-184">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-182">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-181">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-180">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-178">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-177">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-176">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-175">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-174">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-173">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-172">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-171">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-170">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-169">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-168">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-167">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-166">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-162">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-160">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-159">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-158">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-157">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-156">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-155">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-154">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-152">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-151">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-150">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-149">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-148">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-147">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-146">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-145">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-144">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-143">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-142">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-141">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-140">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-139">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-138">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-137">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-136">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-135">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-134">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-133">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-132">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-131">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-130">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-129">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-128">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-127">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-126">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-125">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-124">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-123">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-121">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-117">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-116">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-101">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-100">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-99">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-98">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-97">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-96">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-95">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-94">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-93">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-92">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-87">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-86">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-85">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-84">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-78">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-77">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-76">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-49">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-38">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-34">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-33">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-30">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-29">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-28">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-25">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-19">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-5">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-4">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-3">div class="row">

Please call Congress TODAY and ask them to include the OPEN ACT, HR 971 (Orphan Product Extensions Now, Accelerating Cures & Treatments) in the 21st Century Cures Legislation. The OPEN ACT has the potential to double the number of approved rare disease treatments available to patients. To date, 155 patient organizations support the OPEN ACT, including NORD, Global Genes, and the Genetic Alliance. By standing together we can ensure Congress helps rare disease patients.

Click here to take action: Stand up for Rare Disease Patients TODAY

Please share this alert widely and join this event on Facebook.

Why the OPEN ACT is important: Despite advances made possible by the Orphan Drug Act, 95 percent of the 7,000 rare diseases still have no approved treatments. Biopharmaceutical companies are not repurposing major market therapies to treat rare diseases because there is no incentive for them to do so.

The OPEN ACT is bipartisan legislation that creates an economic incentive for companies to repurpose drugs for rare diseases. The OPEN ACT could:
·         Bring hundreds of treatments to rare disease patients
·         Enable access to safe, effective and affordable treatments
·         Spur biotech investment, innovation, and foster clinical research at universities while creating new jobs

Learn more at: http://curetheprocess.org/ incentivize/

 

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-275">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-274">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-273">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-272">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-271">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-270">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-269">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-268">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-267">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-266">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-265">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-264">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-263">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-262">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-259">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-258">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-256">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-255">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-254">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-252">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-251">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-249">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-248">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-247">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-245">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-244">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-243">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-242">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-239">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-238">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-237">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-236">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-235">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-234">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-233">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-232">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-225">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-224">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-222">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-221">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-220">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-219">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-218">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-214">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-211">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-210">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-209">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-208">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-207">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-206">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-205">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-204">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-203">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-202">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-201">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-200">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-199">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-198">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-197">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-196">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-194">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-193">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-191">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-190">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-189">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-188">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-187">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-186">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-185">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-184">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-182">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-181">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-180">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-178">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-177">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-176">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-175">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-174">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-173">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-172">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-171">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-170">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-169">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-168">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-167">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-166">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-162">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-160">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-159">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-158">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-157">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-156">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-155">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-154">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-152">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-151">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-150">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-149">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-148">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-147">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-146">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-145">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-144">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-143">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-142">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-141">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-140">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-139">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-138">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-137">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-136">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-135">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-134">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-133">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-132">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-131">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-130">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-129">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-128">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-127">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-126">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-125">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-124">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-123">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-121">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-117">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-116">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-101">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-100">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-99">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-98">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-97">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-96">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-95">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-94">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-93">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-92">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-87">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-86">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-85">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-84">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-78">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-77">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-76">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-49">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-38">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-34">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-33">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-30">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-29">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-28">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-25">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-19">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-5">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-4">span class="explanatory-dictionary-highlight" data-definition="explanatory-dictionary-definition-3">div class="row">
I recently spoke with a patient who stated that his marriage was under a great deal of strain – which is highly understandable as the significant others of patients are the caregivers and are often in the line of fire, so to speak.

This was not the first time a wife or husband had confided this to me. Helplessness can cause patients and/or their caregivers great despair – to which wanting to run away is an understandable reaction.

Patients experience pain, embarrassment, and uncertainty when afflicted with P/P or other rare diseases.

The caregivers can empathize, the caregivers cannot truly feel what the patients are experiencing.

Everyone who is a caregiver tries his or her best to be supportive. Every patient who is undergoing this challenge is bound to be depressed and scared at times. Every family member may feel helpless most of the time.

This is the time to reach out and ask for guidance. Finding support groups is easier these days due to social media. Pemphigus Vulgaris is only one of 7,000 rare diseases that exist today and there are sources of information for each one of them. Search the Internet and contact local support groups. Check out the link given here for caregivers (It’s one of the very best!).

http://www.caregiveraction.org/