Rare Disease Day

Rare Disease Day 2021

How will you Show You Care for Rare… this Rare Disease Day? (February 28, 2021)

In 2020 the world’s attention turned to public health matters in light of the COVID-19 pandemic, however, there are still millions in the United States and around the globe living with rare diseases and accompanying life-altering issues that are largely unknown to the general public. Rare Disease Day is on February 28, 2021, and the Foundation encourages you to help shine a light on the challenges faced by GBS|CIDP patients and their families, around the globe.

About Rare Disease Day

Launched by EURORDIS-Rare Diseases Europe in 2008, Rare Disease Day is the patient-led international awareness campaign that brings people together in solidarity with the 300 million patients impacted by rare diseases worldwide. In 2009, Rare Disease Day became a global event when The National Organization for Rare Disorders (NORD) became the official sponsor of the celebration in the United States. 

GET INVOLVED!

This year, the GBS|CIDP Foundation honors those living with rare disease by supporting our global community in new and meaningful ways. “Our mission is to ensure no one, no matter where they reside, faces the challenges of Guillain-Barre Syndrome or Chronic Inflammatory Demyelinating Polyneuropathy, alone.” – Lisa Butler, Executive Director

  • RAISE AWARENESS BY ADDING A LITTLE RARE DISEASE DAY FLARE TO YOUR SOCIAL MEDIA BADGES.  Once you’ve spruced up your pic, copy and paste this message on your social channels:

Sample Tweet

Today is #RareDiseaseDay. I am raising awareness for the #GBSCIDP community & the challenges of rare neurological conditions. #GuillainBarre #CIDP

GLOBAL ACTIVITIES FOR THE GBS|CIDP COMMUNITY, FEB. 28, 2021

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

Rare Disease Day 2020

Giving Hope to our Global Rare Community for #Rarediseaseday

Rare Disease Day logo

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.

Sample Tweet

Today is #RareDiseaseDay. I am raising awareness for the #GBSCIDP community & the challenges of rare neurological conditions. #GuillainBarre #CIDP

Actions

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!

DOWNLOAD RARE DISEASE DAY IMAGE

GBS|CIDP Foundation Launches Rare Disease Day Campaign

Teach One. Be One.
Be a Champion for Rare Disease.

Rare Disease Day - Lori

February 28, 2018 will be the eleventh international Rare Disease Day. On and around this day hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities. This year the GBS|CIDP Foundation is encouraging you to join the cause and TEACH someone about GBS, CIDP or a variant of the condition, and BE a champion for rare disease!

It’s just three easy steps to join our campaign and be a champion for rare:

  1. Teach someone about GBS|CIDP or a variant of the condition.
  2. Download and print the I AM A RARE CHAMPION sign (link below).
  3. Take a photo or selfie and share on social media!

Don’t forget to tag your photo with #ShowYourRare, #Rarediseaseday #gbscidp and let the world know you CARE for RARE.
Sample Social Media Post (simply click Tweet or copy and paste.)

Jim Yadlon image

February 28 is Rare Disease Day. Join the RARE movement! Teach someone about GBS or CIDP & be a Champion 4 Rare like me! #rarediseaseday #ShowYourRare #gbscidp

Download I AM A Rare Champion Sign.

Find out more about Rare Disease Day.