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!
Giving Hope to our Global Rare Community for #Rarediseaseday
Rare Disease Day (RDD) takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year the GBS|CIDP Foundation International has several RDD activities planned around the globe! Check out the calendar below and join us in showing that you care for rare! Download a rare disease day sign below and create a “rare selfie” on social media too! #rarediseaseday.
Today is #RareDiseaseDay. I am raising awareness for the #GBSCIDP community & the challenges of rare neurological conditions. #GuillainBarre #CIDP
February 24 – GBS|CIDP Foundation International will join the FDA global observance of Rare Disease Day in Washington DC, which was created to raise awareness about the 7,000 known rare diseases, many of which have no treatment. Follow us on social media with updates & news from the day.
February 26 – Patient Registry One Year Anniversary! The Foundation will provide a Registry One Year Report on our News and Media section of our website.
February 27 – It’s all because of you! Don’t miss a special thank you message to our donors as recap the 2019 rare achievements that have been supported by your donations.
February 28 – GBS Celebrates Rare Disease Day in Australia! Follow Kelly and Meg’s journey overseas to hold our very first patient support meeting in Australia, on Rare Disease Day!
February 29 – It’s Rare Disease Day! Tell us why you care for rare! Download the RDD image below, use #rarediseaseday and post a message of support on your social media channels!
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