Tag Archives: pemphigus

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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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The International Pemphigus & Pemphigoid Foundation (IPPF) and the entire pemphigus and pemphigoid community would like to thank the House Energy and Commerce Committee for its non-partisan approval yesterday of the 21st Century Cures Act by a vote 51-0.

This legislation has important significance to our community as it will help modernize and personalize healthcare, support disease research, encourage innovation, and improve patient access to treatment. The bill, a year-long in the making, was championed by committee Chairman Fred Upton (R-MI) and Representative Diana DeGette (D-CO).

H.R. 6, the 21st Century Cures Act, has been sent to the House or Senate for full consideration. The IPPF urges you to contact your Representatives and ask them to support this legislation.

The Senate Health, Education, Labor & Pensions Committee (HELP) is currently working on it’s own version of the initiative called America’s Leadership in Medical Innovation for Patients, led by Chairman Lamar Alexander (R-TN). The IPPF will keep you aware of the latest developments as they occur but we also encourage you to reach out to the following Senators to express the urgency in creating legislation that will benefit you and all rare disease patients.

Republicans by Rank
Lamar Alexander (TN)
Michael B. Enzi (WY)
Richard Burr (NC)
Johnny Isakson (GA)
Rand Paul (KY)
Susan Collins (ME)
Lisa Murkowski (AK)
Mark Kirk (IL)
Tim Scott (SC)
Orrin G. Hatch (UT)
Pat Roberts (KS)
Bill Cassidy, M.D. (LA)

Democrats by Rank
Patty Murray (WA)
Barbara A. Mikulski (MD)
Bernard Sanders (I) (VT)
Robert P. Casey, Jr. (PA)
Al Franken (MN)
Michael F. Bennet (CO)
Sheldon Whitehouse (RI)
Tammy Baldwin (WI)
Christopher S. Murphy (CT)
Elizabeth Warren (MA)

For information on 21st Century Cures, go to: http://energycommerce.house.gov/markup/full-committee-vote-21st-century-cures-act

For information on the Senate Health, Education, Labor & Pensions Committee (HELP) go to: http://www.help.senate.gov/

If you would like to get more involved in pemphigus & pemphigoid advocacy, please contact Marc Yale, Peer Health Coach marc@pemphigus.org.

Thank you for your support!

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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!