Rare Disorders

Celebrating a One Year Anniversary this Rare Disease Day!

Rare Disease Day 2020 marks a very special anniversary for the entire GBS|CIDP community. The Foundation is pleased to report that is has been one year since the launch of our GBS|CIDP Patient Registry! We are also excited to share some highlights in our very first Registry Annual Report. 

So far, more than 1,200 people have created a Patient Registry profile. The data published in this report represents the responses collected from the 518 people that have taken surveys within the registry, though not every person responds to every question. Also, people that have joined the registry are from all over the world; almost 60 respondents in the registry come from countries other than the United States, including Australia, Germany, Greece, Israel, Japan, Nicaragua, Kenya, and more!  We thank each and everyone of the participants for taking the time to fill out the surveys, and share their experiences with these rare, and often complex, set of peripheral nerve conditions.

Finally, the data summaries presented only include responses from people that have taken surveys in the GBS|CIDP Patient Registry. If you don’t see yourself represented in these surveys, please visit gbs-cidp.iamrare.org to register and make your voice heard! 

GBS CIDP Patient Registry Annual Report Cover

Founder Estelle Benson Named 2018 NORD Honoree for Abbey S. Meyers Leadership Award

March 21, 2018 — The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 35th Anniversary Celebration presenting the Rare Impact Awards on  May 17, 2018 in Washington, D.C.  We are proud and delighted to announce that our Founder, Estelle Benson, will be accepting on behalf of GBS/CIDP Foundation International, for the Abbey S. Meyers Leadership Award! Congratulations Estelle! To purchase tickets, visit rareimpact.org/awards.

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