Advocacy is when a person or a group of people communicates with a government official or their staff to influence bills and laws that reflect the needs, wishes, or wants of a certain community. Learn All About Advocacy.
APLUS Statement on the State of Plasma
The American Plasma Users Coalition (APLUS) recognizes and applauds the recent statements from the White House that emphasize the importance of plasma and how essential plasma donors are to the healthcare system. This statement rings true for convalescent plasma that may help countless patients battling COVID-19 and is especially true for people all over the…
Advocacy Action Alert: Ask Your Senator to Support Charitable Assistance
Charitable non-profit patient assistance foundations help thousands of Americans afford their health care every year, particularly those who are living with expensive chronic and rare diseases. Recently, Sen. Kevin Cramer of North Dakota developed a provision that would allow third-party groups (like patient assistance organizations) to pay premiums on the behalf of patients during the…
Wrap Up With A Win – Awareness Month’s Advocacy Week Brings Legislative Victories
Our 2020 May Awareness Month went digital this year, but that did not stop nearly 100 advocates across the US from participating in virtual advocacy through the Advocacy Action Center. THANK YOU to everyone who took the time to create a letter for Members of Congress. Together, we make our voices heard by lawmakers and…
May is GBS|CIDP Awareness Month
May of 2020 has brought unprecedented challenges and changes, the world over. We hope you find comfort in knowing that the GBS|CIDP Foundation has made every effort to continue to Educate our patients in new and innovative ways.
California – Advocates Needed
The GBS|CIDP Foundation International is calling for volunteers in California to reach out to Assembly Member Evan Low, the Chair of the Business and Professions Committee, to show support for Assembly Bill 2199. This bill in the California Government will help to improve the plasma collection process in the state and hopefully result in more…
#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…
Advocacy from Home in Spring, 2020
There is no doubt that we are currently living in a time that is unprecedented! I hope that we all find ways to stay safe, comfortable, and optimistic during the COVID-19 pandemic that is happening across the world. We at the Foundation are thinking of you all! Here in the US, we are seeing that…
Ask Your Senators to Keep GBS on the DOD PRMRP
One of the cornerstones of our legislative efforts is securing funds for more research into Guillain-Barre Syndrome. The Department of Defense (DOD) maintains a Peer-Reviewed Medical Research Program (PRMRP) that funds research exclusive to topics or medical conditions on a list created by a committee in the Senate. Help us keep GBS on the list…
Medicare and Home Infusion IVIg: What You Need to Know
By: Chelsey Fix Medicare is confusing – that’s a fact! Add the confusing Medicare system on top of a complex treatment for a rare disease, and it’s easy to feel overwhelmed. The Foundation is here to help all of our patients navigate health insurance headaches! For now this article explains the current Medicare situation for…
GBS|CIDP Foundation International Becomes a Member of the National Health Council
In 2019, The GBS|CIDP Foundation International was honored with a membership to the National Health Council (NHC). The Foundation joins over 140 other organizations, including major pharmaceutical companies, well-known patient support foundations, and respected professional societies, in their Membership. The mission of the NHC is to provide a united voice for the 160 million people…
End Of Year Advocacy Recap
2019 has been a whirlwind of advocacy activity! We launched a new toolkit, a new Advocacy Action Center, reintroduced a Medicare IVIG Access Enhancement Bill, and moved our legislative priorities forward. Kudos to all of your hardwork! Before we think about what is in store for 2020 advocacy, let’s get a more detailed update on…
Advocacy On & Off Capitol Hill
By Chelsey Fix, Advocacy Manager I blinked and it turned into November! It seems like no time at all since we started this important advocacy work during Awareness Month in May, but I have to remind myself that it has been 6 months! Besides the essential work we have done together to advance HR 2905…
Welcome to Fall Advocacy
Congressional Recess officially ended on September 9th, and the Northeast is already seeing leaves fall from the trees (no color change, yet). Now that Washington, D.C. is back to being fully operational, we have a lot of great things to report on! Check out our highlights below, and stay up to date with all things…
August Update on Advocacy
By Chelsey Fix Advocacy at Home, Current Cosponsors, and State of the States August heat is baking creativity here at the Foundation, which means that I’ve been looking towards the future and thinking about how we can continue to advocate together on all issues that matter to the GBS|CIDP Patient Community. But before we go…
3 Ways to Advocate during August Advocacy Month
Goal To encourage GBS|CIDP community members to participate in a meeting with the federal Representatives and Senators in their local “home” offices to Raise awareness of GBS, CIDP, and variants Ask for support of HR 2905 They’re Comin’ Home! Get involved in Advocacy this August when your Representative and Senators are in their HOME town!…