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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

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Having a flare after being in remission can be a scary and frustrating experience. Thoughts run through your head about your previous experiences and you may wonder if your disease will be as bad as it was before. When you have the flare, it is important to recognize it and take the challenge head-on. It’s easy to become stressed from the uncertainty and lack of control, but remember that stressing will only make things worse. Here are some tips to reduce the intensity and time that you may have the flare.

1.      Schedule an appointment with your doctor immediately.

2.      Have your doctor give you a clinical diagnosis or get a biopsy done to confirm the flare. There are many differential diagnoses for your disease so you want to be sure it is what you suspect.

3.      Discuss with your doctor a treatment strategy and begin right away.

4.      Track your disease activity in a log, this will help you determine if you condition is improving.

5.      Follow up with your doctor regularly and advocate for yourself. Seeing your doctor every 4-6 weeks is recommended. If you have an aggressive flare you may need to see your doctor more frequently.

6.      If you need support, contact the IPPF and talk with a Peer Health Coach. Coaches are available to answer questions and help you decide how to best handle your flare.

It is common for flares not to be as intense as your first experience with the disease, but all patients have different experiences. The important thing is to be proactive and stabilize the disease activity as soon as possible. Flares are part of living with pemphigus and pemphigoid but if they are handled quickly and with a positive attitude you can eliminate them sooner.

Remember, if you have questions to “Ask a Coach” because when you need us we are in your corner!

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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/