GBS/CIDP Foundation International
Script error: No such module "Draft topics".
Script error: No such module "AfC topic".
 | |
| Founded | 1980 |
|---|---|
| Founder | Estelle Benson |
| Type | Philanthropic Foundation |
| Location | |
Key people |
|
| Website | www |
Guillain–Barré Syndrome | Chronic Inflammatory Demyelinating Polyneuropathy Foundation International (GBS|CIDP) is a global nonprofit organization dedicated to supporting individuals and their families affected by Guillain–Barré Syndrome (GBS), Chronic inflammatory demyelinating polyneuropathy (CIDP), and related conditions such as Multifocal Motor Neuropathy (MMN), through a commitment to offering support programs and educational resources, funding research and advocating for legislation that has a direct effect on the community[1]. There are over 70,000 members world-wide, with 200 chapters in over 40 countries. Executive Director Lisa Butler was included in a series of profiles of the leaders of rare disease organizations based in Pennsylvania in 2020.[2]
Since 2004 the GBS|CIDP Foundation International has supported over 6 million dollars in research, including the International Guillain-Barre Outcome Study.[3] Additionally the Foundation produces educational events, for both patients and caregivers world-wide, and a number of multi-lingual educational brochures and videos.
Organization and Operations[edit]
The Foundation's Global Medical Advisory Board (GMAB) is made up of over a dozen physicians who are considered experts in the fields of GBS|CIDP or variants, such as Multifocal Motor Neuropathy (MMN). Seven of 18 physician members of the Foundation's Global Medical Advisory Board are listed as co-authors of the BioSpace 2020 article, Guillain-Barré Experts Clarify COVID-19 Vaccine Confusion with Open Letter to Dr. A.S. Fauci.[4]
The Foundation has been acclaimed as one of few organizations in which 100% of donations are used for the purpose for which they are collected, and acknowledged by Charity Navigator as a four star non-profit since 2013.[5] The Voluntary Health Agency Community has acknowledged the Foundation among the top charities in the field and the Foundation has been a member of the National Health Council since 2019.[6]
The Foundation is included in the NIH list of resources for the Genetic and Rare Diseases Information Center.[7] GBS|CIDP Foundation resources have been referenced by pharmaceutical industry partners for educational publications and websites such as, Do I Have CIDP Symptom checker.[8]
National Grassroots Campaign[edit]
Since 2016, each year the GBS|CIDP Foundation International has offered a National Grassroots Fundraising Program, the Walk & Roll Program, for those seeking to participate in fundraising for research.
Research Awards[edit]
The research program has been active since 2006 and includes the following awards:
Discovery Awards - This type of grant awards up to $100,000 per year for a period of two years to intermediate/experienced researchers seeking to answer complex research questions about GBS, CIDP, or variants.
Elevation Award - This grant awards of up to $50,000 for 1 year may be distributed to fund smaller projects OR portions of projects. This award category is available at the discretion of the Foundation.
Benson Fellowship Award - The Benson Fellowship is a three-year fellowship that provides an opportunity for scientists to engage in the study of peripheral nerves. The Fellowship provides funds of up to $150,000 for three years, but only one Benson fellowship is awarded every three-year period.
GBS|CIDP Foundation International is an organization of support for the Plasma Protein Therapeutics Association PPTA.[9]
Public Health Policy Initiatives[edit]
Each year the Foundation outlines a legislative agenda that describes "requests" they will make to US federal government to improve the lives of the patient community. In 2020 and 2021, the Foundation asked the 117th Congress to cosponsor HR 3808 - legislation enacting a Medicare Part B Home Infusion Demonstration Project for patients with CIDP and MMN.[10]
History of GBS|CIDP Foundation International[edit]
The GBS|CIDP Foundation International began in the fall of 1980 as the Guillain-Barré support group.[11] The first meeting consisted of eight people in the dining room of founders, Estelle and Robert Benson.[12] By the middle of 1981 there were 25 members, brought together by referrals from 32 Philadelphia hospitals and other referrals. The group was the first such group registered with the National Health Information Clearinghouse. Soon phone calls from all over the United States were coming into the GBS hotline. The group grew to 100 members by 1983 with outreach in other states. They were receiving up to 20 letters a day from patients and families. A medical advisory board, headed by Dr. Arthur K. Asbury, was added for additional support. A letter to Ann Landers published in 1985 resulted in over 1,500 letters to the Foundation and a surge in membership.
Today the Foundation has become an international organization of 70,000 members with 200 chapters in 46 countries, all of them dedicated to providing support and assistance to GBS|CIDP patients and their families. The Foundation continues to be funded by contributions from individuals who have been personally touched by GBS, CIDP, and other variants, as well as by corporate donors.
Worldwide Centers of Excellence[edit]
Based on levels of expertise, available treatments, facilities, and research capabilities, 57 medical centers worldwide have been deemed Centers of Excellence for treating the conditions of GBS and CIDP, by the Foundation's GMAB, including Penn Medicine and UNC School of Medicine.[13][14]
References[edit]
- ↑ "GBS/CIDP Foundation International". National Organization for Rare Disorders. Retrieved 2022-01-24.}
- ↑ "PA Rare Disease Leader Profile: Lisa Butler of GBS/CIDP Foundation International". Pennsylvania Rare Disease Advisory Council. 5 November 2021. Retrieved 2022-01-24.}
- ↑ "International Guillain-Barré Syndrome Outcome Study". International Guillain-Barré Syndrome Outcome Study. Retrieved 2022-01-24.}
- ↑ "Guillain-Barré Experts Clarify COVID-19 Vaccine Confusion with Open Letter to Dr. A.S. Fauci". BioSpace. Retrieved 2022-01-24.}
- ↑ "GBS/CIDP Foundation International". Charity Navigator. Retrieved 2022-01-24.}
- ↑ "GBS/CIDP Foundation". National Health Council. Retrieved 2022-01-24.}
- ↑ "GBS/CIDP Foundation International". Genetic and Rare Diseases Information Center. Retrieved 2022-01-24.}
- ↑ "Do I Have CIDP". Do I Have CIDP?. Retrieved 2022-01-24.}
- ↑ "Patient Organizations". Plasma Protein Therapeutics Association. Retrieved 2022-01-24.}
- ↑ "H.R.3803 - Medicare IVIG Access Enhancement Act". Congress.gov. 14 June 2021. Retrieved 2022-01-24.}
- ↑ "Estelle Benson, Founder of GBS/CIDP Foundation International: Abbey S. Meyers Leadership Award Honoree". National Organization for Rare Disorders. 25 April 2018. Retrieved 2022-01-24.}
- ↑ "From a Living Room to 46 Countries". CSL Behring. Retrieved 2022-01-24.}
- ↑ "UNC Neurology Receives New Center of Excellence Designation". UNC School of Medicine. September 2021. Retrieved 2022-01-24.}
- ↑ "Neuromuscular Disorders". Penn Medicine. Retrieved 2022-01-24.}
External Links[edit]
- GBS|CIDP Foundation International Official Website
- GBS|CIDP Organisation Europe Official Website
- Charity Navigator Rating for GBS|CIDP Foundation International
This article "GBS/CIDP Foundation International" is from Wikipedia. The list of its authors can be seen in its historical and/or the page Edithistory:GBS/CIDP Foundation International. Articles copied from Draft Namespace on Wikipedia could be seen on the Draft Namespace of Wikipedia and not main one.
