GBS|CIDP Foundation International
General Information
Identification Code: 444214892085-61
Website: [object Object]
Entity Form: Non Profit
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 5/2/2024
EP Accredited Number: 0
Mission & Interests
Goals: We improve the quality of life for individuals and families affected by GBS, CIDP, MMN, and related conditions. Our unwavering commitment to the patients we serve is built on four pillars: support, education, research, and advocacy.
We support patients by nurturing a global network of volunteers, healthcare professionals, researchers and industry partners to provide them with critical, timely, and accurate information;
We educate doctors, clinicians, patients and caregivers to increase awareness and understanding;
We fund research through grants, establishing fellowships and other appropriate avenues to identify the causes of and discover treatments;
We advocate at the federal, state, and grassroots levels to educate policymakers and help them make informed decisions that benefit our patient community.
Interests Represented: Does not represent commercial interests
Interests:
- Communication
- Public health
Levels of Interest:
- global
Activities
Main EU Legislative Proposals: EU SoHo Regulation
Critical Medicines Alliance
- Advocating for legislation that pertains to relevant therapies, adaptive devices, resources, research, and the collection and distribution of treatments for the conditions of Guillain-Barre Syndrome, Chronic Inflammatory Demyelinating Polyneuropathy, or Multi-focal Motor Neuropathy, including bio-plasma treatments, but not exclusive to.
Communication Activities: Communications activities to include letter writing campaigns, Rare Disease Day activities, Plasma Awareness, Awareness to Healthcare Professional in the form of public relations campaigns and awareness raising events.
Inter-institutional or Unofficial Groupings: Disability
Head Office
Address: 375 East Elm StreetSuite 101
Post Code: 19428
City: Conshohocken
Country: UNITED STATES
Phone: [object Object]
EU Office
Address: Via Pietro Metastasio n. 7/b
Post Code: 90011
City: Bagheria
Country: ITALY
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Membership Information
Members10 Percent: 1
Members25 Percent: 1
Members50 Percent: 0
Members75 Percent: 1
Members: 3
Members F T E: 1.100000023841858
Info Members: 3 Employees
Structure
Structure Type: Structure
Is Member Of: GAIN of UK: Guillain-Barré Autoimmune conditions and Inflammatory Neuropathies https://gaincharity.org.uk/
Organisation Members: EURORDIS
Rare Disease Day
PPTA Plasma Protein Therapeutics Association
IPOPI International Primary Immunodeficiencies Organization
PLUS Platform of Plasma Protein Users