Advocacy News

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.

  • 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 … Read more
  • It’s a wrap for 50 to Forward Advocacy Training 2022
    In 2022, each month, a group of loyal advocates gathered together for an online, interactive, training series.  The monthly sessions were an opportunity for advocates to stay informed of the latest news on H.R. 3808 legislation, network with a team of patients, caregivers and legislation professionals, learn new patient advocacy skills (like effectively telling their … Read more
  • State Advocacy Works!
    State Advocacy Works! Thanks to the collective advocacy of many groups over many months, Massachusetts Governor Charlie Baker signed a bill into law that restricts the practice of Step Therapy. Step therapy is when patients are required to try using cheaper drugs in their recovery before “stepping up” to pricier meds. The new law requires … Read more
  • August Advocacy
    Every year, Congressional Members take the month of August to spend time in their State or District to learn more about the issues that matter most to the people they represent. This is a great chance to connect with the local office – every Member has at least one office in their State or District … Read more
  • Congress Recognizes the month of May as GBS|CIDP Awareness Month
    On May 27, Congressman Garamendi, recognized the Month of May as GBS|CIDP AWARENESS Month and introduced the Medicare IVIG Access Enhancement Act to the House of Representatives. Read full script here Download (PDF)
  • Tell Congress Why Plasma Is Essential
    For many people, IVIG and SCIG is an amazing, life-saving medication! IVIG and SCIG are immunoglobulin therapies created from source plasma. Source plasma is donated from healthy volunteers at one of many plasma collection centers across the country. People who donate plasma are everyday heroes and we thank them for their time and contribution!  Currently, … Read more
  • NEW Bill in Congress Aims to Help Improve Access to Home Infusion IVIG for CIDP and MMN Patients, HR 3808
    As a result of the community coming together this year, the Foundation is proud to share the wonderful news that our Congressional champions, led by Congressman Earl Blumenauer, Congressman G.K. Butterfield, and Congressman Chris Smith, have introduced a new bill that aims to help improve coverage of home infusion of IVIG for CIDP and MMN … Read more
  • Welcome, New Congress!
    As we kicked off 2021 full of hope for the future, we also welcomed a new Congress to Capitol Hill. The 117th Congress first convened on January 3, 2021, and now that they are settled in, we believe it is time for the GBS|CIDP and variants community to reach out and introduce our Representative and … Read more
  • GBS|CIDP Foundation International continues to work with FDA on GBS|CIDP patient concerns
    After holding a GBS Patient Listening session with the FDA in the Summer of 2020, the Foundation has continued to work with key leadership at the FDA to continue bringing the patient voice to their current work. The FDA holds a very special role in the US healthcare system. Their job is to review and … Read more
  • Foundation Hosted Patient Listening Session on Guillain-Barre Syndrome with The FDA
    On September 29, 2020, the GBS|CIDP Foundation International organized a patient-led listening session on Guillain-Barre Syndrome (GBS). More than 30 members of various branches within the FDA logged on to the virtual meeting to hear about patients’ experiences with GBS. The FDA’s role was to listen and learn about what life is like during and … Read more
  • GBS|CIDP Foundation International Dedicates October to Advocacy “Month of Action”
    [CONSHOHOCKEN, PA] — GBS|CIDP Foundation International, August 31, 2020 This October, The GBS|CIDP Foundation International is encouraging patients and caregivers affected by Guillain-Barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP,) or variants of the condition such as Multifocal Motor Neuropathy (MMN), to join a virtual “Month of Action” advocacy campaign. Opportunities for participating in “Month … Read more
  • 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 … Read more
  • 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 … Read more
  • 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 … Read more
  • 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 … Read 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 … Read more
  • 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 … Read more
  • 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 … Read more
  • 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 … Read more

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