Given these disorders are so rare, it can be challenging to find news stories, blogs or other online information. As part of keeping our community informed and up-to-date, we continually gather news-worthy information and share it here.
We also like hearing from you about the types of stories, articles, etc. that you are interested in reading. Feel free to send us feedback or even articles that you suggest would be appropriate and helpful for others.
September Hill Visit
In anticipation of the Foundation’s most recent iteration of our Medicare IVIG Access Enhancement Act being introduced in the House of Representatives in the coming days, Foundation staff Chelsey Fix and Ellie Herman went down to Capitol Hill for a day of on-the-ground advocacy. Joined by Health and Medicine Counsel staff, they met with 6…
Tips and Tricks for Traveling
The Coffee Chat, Tips and Tricks for Traveling, hosted by Foundation staff members Kelly McCoy and Lori Besiege, offered valuable support on how to navigate the challenges that may arise while you are on a plane, train, or bus with a neurological condition that may cause mobility issues. Whether you are traveling to our International…
Foundation Co-hosts Open House with Bryn Mawr Rehab
In July of 2023, the Foundation co-hosted an Open House with Bryn Mawr Rehabilitation Hospital in Malvern, PA. GBS and CIDP patients in attendance received a guided tour of the facility from the PT and OT’s, as well as a demonstration of adaptive devices and recreational therapies. The feedback from our community has been very…
Volunteer spreads awareness in local hospitals
There is no greater force than like-minds joining together for a common mission to change lives. The Foundation volunteers continue to play an active role in our community by raising awareness of GBS, CIDP, MMN, and the Foundation resources. Ray Lopez, Boca Raton Liaison, has made it his mission to visit local hospitals and share…
Taking Volunteering to the Next Level
Taking Volunteering to the Next Level The Foundation volunteers are taking volunteering to a whole new level! Don’t miss a chance to tune into what our current volunteers are doing in the community. There is no greater force than like-minds joining together for a common mission to change lives. The Foundation volunteers continue to play…
Research Poster Opportunity for GBS, CIDP, MMN Patient Symposium
We Invite You to Participate! As valued members of our medical community, we would like to inform you and your colleagues in training, residents, and fellows of a special opportunity to participate in the 2023 GBS|CIDP Foundation Patient Symposium, October 5-7 in Alexandria, VA. Poster Request Drs. Jeffrey Allen and Bart Jacobs, as Chair and…
Statement regarding GBS alert in Peru
Statement regarding GBS alert in Peru July 10, 2023 The Foundation and its Global Medical Advisory Board are aware that Peru has issued a statement of emergency due to an increase in cases of Guillain Barre Syndrome. Please know we are here for you and the GBS|CIDP Foundation International is committed to addressing your concerns…
May Awareness Proclamation
The Foundation’s Regional Directors, Merrilyn Macurak and Rick Forney are raising awareness in Virginia and Conway, South Carolina! See the official “Proclamation.” Way to go Rick and Merrilyn!
Coping with School & Treatment Plan for GBS|CIDP
By Megan Kaump A diagnosis of GBS, CIDP, or variants is frightening and devastating for anyone, but when a child is diagnosed it adds a very different set of emotions and experiences. It is heart- breaking to see your child go through such challenges and there is the added component of how the child’s schooling…
#ItsMyTurn
In partnership with Immunoglobulin National Society, we encourage our community to join the #ItsMyTurn campaign. This campaign encourages people who are able, to take action that directly impacts the patients we serve, by donating plasma! How Do I Donate and Join the Campaign? Locate your nearest Plasma Donation Center Donate plasma. Take a picture or a…
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!
Clovis Walk & Roll Breaks its Own Record!
The GBS|CIDP Foundation International is delighted to share this important Walk & Roll update! On March 9 at Dry Creek Park in Clovis, California, GBS volunteer and Clovis Walk Chairman, Robert Vasquez hosted yet another exciting Walk & Roll fundraising event with a record-breaking 320 walkers in attendance! Thus far the event has raised $10,356…
CIDP Disease Burden — Results of a US Nationwide Patient Survey
In 2017, a nationwide survey of US CIDP patients was conducted to assess the impact of disease-related disability and treatment on lifestyle and work activities. Approximately 3250 individuals aged ≥18 years, recruited by the GBS|CIDP Foundation and self-reported to have CIDP, were invited to complete an online survey; of these, 475 completed the survey and…
Clovis, CA Walk & Roll Chair in the News
On March 4, the Fresno BEE published “Rare illness left this Clovis man paralyzed. Now he’s helping others,” featuring GBS|CIDP Foundation’s volunteer, Rob Vasquez of Clovis, CA. The Clovis Walk & Roll, March 9, hosted by Rob, is the first of the 2019 Walk & Roll season! See Fresno Bee Video and Article
One-Day Regional Meetings Are Back for 2019
2019 Schedule of One-Day Regional Conferences including at dates and locations.