National Health Council Board of Directors
Congratulations Lisa! On December 6, 2022, Executive Director, Lisa Butler was elected to the National Health Council Board of Directors. Congratulations Lisa! She is pictured here with incoming Chairman of the NHC Board, Kenneth Mendez.
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…
Patient and Caregiver Preferences on CIDP Treatment
Patient and Caregiver Preferences on CIDP Treatment A research team is looking for patients and their caregivers to participate in an online survey about experiences with CIDP and preferences for CIDP treatments. Your perspectives will help improve the understanding of patients’ and caregivers’ preferences and inform the development of future potential CIDP treatments. If you…
CIDP Patient Perspectives on IG Treatment
CIDP Patient Perspectives on IG Treatment A research team is looking for participants for a market research study on treatments for Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). If you currently receive immunoglobulin (or Ig) therapy for CIDP, you might be a good fit for this study. Help others with CIDP by participating in this important research….
Adaptive Devices, New Patient-Reported Product List
Adaptive Devices, New Patient-Reported Product List LIFE with Peripheral Neuropathy just got a little easier… Our Adaptive devices table at this year’s Symposium was a huge hit, thanks to the great efforts of volunteers Julie Bell and Emma Bao! But it doesn’t end there, we have published a list of unique items that are used to…
Self-Care for Caregivers: What? Why? How?
Self-Care for Caregivers: What? Why? How? On our website, the Foundation reminds GBS|CIDP caregivers that no one can prepare you for the challenges you will face. Though this journey is stressful, there are things you can do to help you manage. One of the most important is taking care of yourself. What is self-care? …
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…
CIDP ARISE Clinical Trial
Have you been diagnosed with CIDP? A clinical research study (ARISE) is now enrolling to evaluate an investigational medication. Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disease where thebody’s natural defenses, like antibodies, attack the covering of the nerves, called myelin,and damage nerve function. While symptoms aren’t the same for everyone, CIDP canmake your…
GBS CIDP Foundation International Earns Coveted 4-Star Rating From Charity Navigator
Conshohocken, PA (June 2022) – GBS|CIDP Foundation International’s strong financial health and commitment to accountability and transparency have earned it a 4-star rating from Charity Navigator, America’s largest independent charity evaluator. This is the 11th consecutive time that GBS|CIDP Foundation International has earned this top distinction. Since 2002, using objective analysis, Charity Navigator has awarded only…
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)
2022 GBS|CIDP Awareness Month
May is GBS|CIDP Awareness Month May is GBS|CIDP Awareness Month around the world! This year we spreading awareness and support through new and innovative programming, including the Be the Bridge Awareness Campaign directed to Healthcare Professionals. Additionally we are launching a New Advocacy Training series, and an Ask the Expert Presentation, you will not want…
Sanofi Clinical Trial – CIDP Patients
A Phase 2 clinical study in adult patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Sanofi is currently recruiting patients to evaluate effectiveness and safety of a new investigational medicine called “SAR445088” for the treatment of CIDP. SAR445088 is a monoclonal antibody with a new mechanism of action as it targets the complement system directly. All…
Social Media Ask the Experts
What we learned from January, Social Media Ask the Experts On January 20, 2022, the GBS|CIDP Foundation International sat down with Hannah Joya and Melody Olander for Episode 13 of our Ask the Experts Series, “Let’s Get Social,” to discuss their involvement in the GBS, CIDP community and specifically the role that social media plays…