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.
Rare Disease Day 2024
Rare Disease Day: February 29, 2024 About Rare Disease Day Launched by EURORDIS-Rare Diseases Europe in 2008, Rare Disease Day is a 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) officially sponsored the celebration in the United States. GET INVOLVED!…
Call on Airlines to Respect People with Rare Conditions and their Medical Equipment
The GBS|CIDP Foundation International acknowledges the urgent need for airlines to respect and improve their treatment of people with rare conditions and their medical equipment while at airports and flying. Too often, mobility devices, wheelchairs, and other medical equipment are mishandled or damaged by airline staff due to neglectful treatment and a lack of understanding…
2023 Symposium Hill Day
Sharing Patient Stories on the Hill Written by Ellie Herman, Advocacy Coordinator To kickoff this year’s 2023 International Symposium, the advocacy team brought 60 patients and care partners to Capitol Hill for a day of storytelling and advocacy with our lawmakers. Hill Day participants were divided into 11 teams and interacted with over 30 offices…
Plasma Awareness Event at Meredith College
Written by Ellie Herman, Advocacy Coordinator To recognize International Plasma Awareness Week and educate their community about the need for plasma donations, students and staff at Meredith College in Raleigh, North Carolina held a Project Plasma awareness event on October 4th. Meredith’s Marketing and Communications Office and Student Wellness Organization hosted a tabling event where…
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…
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…
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…
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…
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,…
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…
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…
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…
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…
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…