Recent meetings
No recorded meetings with EU commissioners.
Mission & 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.
EU Legislative Interests
EU SoHo Regulation Critical Medicines Alliance Biotech Act - 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.
Interests Represented
Does not represent commercial interests
Member Of
EURORDIS https://www.eurordis.org/who-we-are/our-members/ Rare Disease Day PPTA Plasma Protein Therapeutics Association IPOPI International Primary Immunodeficiencies Organization PLUS Platform of Plasma Protein Users https://plasmausers.org/portfolio-items/organisations/ Orphanet https://www.orpha.net/it/patient-organisations/patient/686925?name=gbs%20CIDP TRANSFORM Alliance https://transformalliance.eu/
Organisation Members
https://www.gbs-cidp.org/support/international-contacts/ Inflammatory Neuropathies UK https://www.inflammatoryneuropathies.uk/ Selbsthilfe für entzündliche Neuropathien, Guillain-Barré-Syndrom und dessen Varianten https://gbs-selbsthilfe.org/ GBS Support Group NZ Trust https://gbsnz.org.nz/ Asociatia Romana pentru Boli Neurologice Periferice https://arbnp-cidp.ro/ GBS|CIDP España- Polineuropatías Inmunomediadas https://gbs-cidp.org.es/ GBS & CIDP Initiative Schweiz https://www.gbsinfo.ch/ axON - Association for People with CIDP | GBS | MMN http://www.axon.org.pl/
Connected Legislation