GBS/CIDP Foundation International

What GBS/CIDP Foundation International does

GBS/CIDP Foundation International is a 501(c)(3) nonprofit patient support organization founded in 1980 by Estelle Benson following her husband's diagnosis with Guillain-Barré Syndrome. Headquartered in Conshohocken, Pennsylvania, with a registered presence in Narberth, the foundation serves patients with Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Multifocal Motor Neuropathy (MMN), along with their caregivers and the clinicians who treat them. Its core offerings are non-commercial: educational resources, a personalized Health Navigator service, community forums, peer-support chapters, biennial international symposiums, annual virtual summits, Walk & Roll fundraising events, and a Centers of Excellence program. The foundation is the only organization providing dedicated support specifically for MMN patients, and it operates more than 200 chapters across 46 countries, supporting over 35,000 patients, caregivers, and medical professionals globally.

The foundation's technology stack is purpose-built for community engagement and research enablement rather than commercialization. Its proprietary Patient Registry collects standardized patient-reported questionnaires and provides de-identified data to researchers and healthcare professionals. The website supports 12 languages, and the foundation operates a multilingual community forum. The Global Medical Advisory Board, drawn from world-renowned neuromuscular experts, underpins both clinical credibility and content production. Research grants, including the Benson Fellowship, are awarded to investigators at a 0% indirect cost rate, signaling a direct-to-science funding posture.

The foundation's revenue model is entirely donation- and grant-based. Individual donations, Walk & Roll peer-to-peer fundraising, and grants from private foundations and government sources fund all operations; no fees are charged to patients or clinicians for any service. Strategic priorities established in 2024 explicitly target revenue diversification toward government grants and private foundation support, alongside global geographic expansion into the EU, Asia-Pacific, and Latin/South America. Coalition memberships with the National Organization for Rare Disorders (NORD), Research!America, and the Peripheral Nerve Society, plus collaborative academic studies (IGOS, INCbase), reinforce the foundation's positioning as a research convener and patient advocacy body in the rare neurological disorder space.

Name

GBS/CIDP Foundation International

Legal name

The Guillain-Barré Syndrome/Chronic Inflammatory Demyelinating Polyneuropathy Foundation International

Website

https://gbs-cidp.org

Company type

Private

Founded year

1980

Operating status

Operating

Headcount range

11–50 employees

Short description

The GBS/CIDP Foundation International is a 501(c)(3) nonprofit founded in 1980 that supports patients with Guillain-Barré Syndrome, CIDP, and MMN, their caregivers, and treating clinicians through education, a multilingual community forum, research grants, and a global network of 200+ chapters in 46 countries.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Support Services

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (62419)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Non-Communicable Diseases (NCDs) & Mental Health Programs (BPADAIAK)

Keywords

• Rare disease advocacy
• Patient support services
• Neuromuscular disorder education
• Patient registry data
• Community health support

Headquarters

HQ city

Narberth

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Charitable Contributions: Individual donations from patients, families, caregivers, and supporters. The foundation receives donations through its website, events, and direct mail campaigns.
2. Research Grants: Funding research through grants, establishing fellowships (Benson Fellowship), and supporting clinical studies. Grants are awarded to investigators for salary support and study execution with 0% indirect cost rate.
3. Government and Private Foundation Grants: Strategic planning mentions focus on diversifying revenue with specific focus on government grants and private foundations. H.R. 5818 advocacy work related to Medicare Part B patient infusion coverage.

Go-to-market motion2 records

Distribution channels7 records

Marketing channels13 records

Core offering

GBS/CIDP Foundation International is a global nonprofit patient support organization that provides free programs and resources to improve the quality of life for people affected by Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN), and related variants. Its core offerings span patient education (multilingual booklets, guidelines, expert-reviewed content), personalized support services (Health Navigator, insurance and financial assistance guidance, mental health referrals), peer community building (community forum, local chapters in 46 countries, Walk & Roll events), research funding (Benson Fellowship, research grants, patient registry), and advocacy (H.R. 5818 policy work, pharmaceutical partner treatment access programs).

Product overview

GBS/CIDP Foundation International is a global nonprofit patient support organization — not a technology product company. Its offerings consist entirely of patient-facing services, educational resources, community programs, and advocacy initiatives centered on Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Multifocal Motor Neuropathy (MMN). The organization does not offer a software platform, digital product, or technology module for external use.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Registry A proprietary patient registry collecting standardized patient-reported questionnaires from individuals affected by GBS, CIDP, and MMN. Provides de-identified data to healthcare professionals and supports medical research on these rare neurological disorders. Available free of charge to patients globally.
• Health Navigator Service Personalized one-to-one support service providing guidance to GBS, CIDP, and MMN patients on medical insurance reimbursement, financial resources, disability benefits, adaptive devices, care transitions, and mental health referrals. Provided free of charge to patients and caregivers.
• Community Forum Online discussion board platform at forum.gbs-cidp.org enabling patients, caregivers, and family members to connect, share experiences, and provide mutual support for GBS, CIDP, and MMN. Free to access globally.
• Education Center Comprehensive online Education Center providing trusted, expert-reviewed guides, booklets, treatment guidelines, condition overviews, and resources accessible in 12 languages for patients, caregivers, and medical professionals managing GBS, CIDP, and MMN.
• Walk & Roll Fundraising Events Annual local fundraising and awareness events held across major US cities, bringing together patients, families, and supporters to raise funds for foundation programs, research grants, and patient services.
• International Patient Symposium Biennial international symposium convening patients, families, caregivers, and healthcare professionals from around the world for education, research updates, and community engagement on GBS, CIDP, and MMN.
• Virtual Summit Annual virtual summit providing accessible educational programming and community connection opportunities for GBS, CIDP, and MMN patients, caregivers, and medical professionals globally.
• Research Grant Program and Benson Fellowship Grant funding program awarding research grants and the Benson Fellowship to clinical investigators studying GBS, CIDP, and MMN. Provides salary support and study execution funding with a 0% indirect cost rate. Millions in grants have been awarded since 2004.
• Centers of Excellence Program Program designating and recognizing clinical Centers of Excellence with demonstrated expertise in diagnosing and treating GBS, CIDP, and MMN, helping patients locate specialist care and supporting clinician referrals.
• Be the Bridge Program Healthcare professional outreach program engaging clinicians globally to raise awareness of GBS, CIDP, and MMN, support continuing education, and drive patient referrals to foundation resources and Centers of Excellence.
• Doctor-to-Doctor Consultation Free consultation service enabling treating physicians to consult with experienced neuromuscular specialists regarding GBS, CIDP, and MMN patient diagnosis, treatment, and management.
• Treatments & Access Portal Access portal providing GBS, CIDP, and MMN patients with information on treatment options, medication support programs, and patient assistance programs offered through pharmaceutical industry partners.

Quantifiable outcome

• Over 35,000 patients, caregivers, and medical professionals supported globally
• +3 more outcomes

Named customers5 records

Segments4 records

Ideal customer profiles6 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Eleven partnerships are on record, tiered core, major and supporting.

• National Organization for Rare Disorders (NORD)coreOthersMember organization of NORD, a nonprofit association representing the rare disease community. Supports advocacy and policy efforts for rare disease patients.
• National Coalition for Research in Neurological DisorderscoreOthersCoalition member supporting research advocacy for neurological disorders.
• Research!AmericacoreOthersCoalition member supporting medical research advocacy and funding awareness.
• International Guillain-Barre Outcomes Study (IGOS)coreStrategic or Co-development PartnerCollaborative academic study aiming to identify clinical and biological determinants and predictors of disease course and outcome in GBS patients. Foundation facilitates information sharing through Global Health Network portal.
• INCbasecoreStrategic or Co-development PartnerCollaborative academic registry exploring CIDP across the globe. Collects standardized patient information to understand disease changes over time.
• Peripheral Nerve Society (PNS)coreStrategic or Co-development PartnerInternational nonprofit organization of scientists, physicians, and healthcare providers working to investigate and treat peripheral nervous system diseases. Foundation participates in the Inflammatory Nerve Consortium (INC) special interest group.
• American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM)coreStrategic or Co-development PartnerNonprofit membership association dedicated to advancing neuromuscular and electrodiagnostic medicine. Foundation collaborates on standards of care and education.
• World Federation of Neurology (WFN)majorStrategic or Co-development PartnerInternational organization representing 120 professional national neurological societies worldwide. Federation's mission is to foster quality neurology and brain health worldwide.
• Global Health NetworkmajorStrategic or Co-development PartnerExpansive community of research experts and community health workers. Foundation helps facilitate IGOS information to be hosted on a knowledge hub to bring GBS diagnosis and treatment information to worldwide clinicians.
• Interdisciplinary Health Committee MemberssupportingOthersExperts from various specialties including Eric Christian (Licensed Clinical Mental Health Counselor), Maria Harris PT DPT (Physical Therapy), Sterling Painton (Yoga and Wellness), Sandra Bermudez (Psychologist and Wellness Coach), Chrissie Jenkins LISW-CP (Social Work) providing holistic health resources.
• Allied Partner Organizations (Argentina, Australia, Belgium, Canada, Denmark, France, Germany, Italy, Japan, Netherlands, New Zealand, Poland, Romania, Serbia, Spain, Switzerland, UK, and more)coreChannel Partner/ Reseller/ DistributorVolunteer-based partner organizations operating in 46 countries to provide local support, education, and resources for GBS, CIDP, and MMN patients in their regions. Examples include GBS CIDP Support Australia, Fondation Française du GBS, GBS Selbsthilfe Germany, Spierziekten Netherlands, GBSinfo Switzerland, and inflammatoryneuropathies UK.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Larger umbrella advocacy organization representing more than 300 rare disease patient groups. The GBS/CIDP Foundation is a member organization of NORD and Abby S. Meyers supported its founding, making NORD the closest broad incumbent in rare-disease patient advocacy and a natural partner/competitor for policy influence and donor share.

Direct peers

• Muscular Dystrophy Association (MDA): Large US nonprofit supporting patients with neuromuscular diseases including rare conditions such as GBS, CIDP, and related disorders. Operates Centers of Excellence, funds research, runs advocacy, and provides patient support services, overlapping directly with the GBS/CIDP Foundation's neuromuscular focus and Centers of Excellence program.
• Foundation for Peripheral Neuropathy: Nonprofit dedicated to peripheral neuropathy patients broadly, including GBS, CIDP, and MMN. Funds research, publishes patient education, runs support groups, and convenes clinicians, making it the most directly overlapping condition-focused peer in the same therapeutic area.
• Myasthenia Gravis Foundation of America (MGFA): Patient support and research nonprofit for myasthenia gravis, a rare autoimmune neurological disorder. Operates a national chapter network, funds research grants, supports patients and caregivers, and runs advocacy, providing a closely analogous rare-neurology operating model.
• Charcot-Marie-Tooth Association: US nonprofit focused on Charcot-Marie-Tooth disease, another rare inherited peripheral neuropathy. Maintains a patient registry, funds research grants, supports Centers of Excellence, and runs patient/caregiver education programs, mirroring GBS/CIDP Foundation's rare-neurology patient-support and research-funding model.
• ALS Association: Disease-specific health nonprofit supporting patients with amyotrophic lateral sclerosis, a rare neurological condition. Operates a global chapter model, funds research grants, maintains a clinical network, and runs advocacy campaigns, closely mirroring GBS/CIDP Foundation's structure and revenue model.
• Patient Services Inc. (PSI): Nonprofit that provides financial assistance, insurance navigation, and patient support programs for patients with rare and chronic conditions. The GBS/CIDP Foundation's Health Navigator service and Treatments & Access portal are functionally analogous to PSI's patient assistance model, and the foundation's founder received PSI's President's Award.

Others

• World Federation of Neurology (WFN): International NGO representing 120 national neurological societies worldwide. The GBS/CIDP Foundation lists WFN as a Major strategic partner, positioning it as an enabling global network that amplifies the foundation's reach into national neurology societies where it does not directly operate.
• Peripheral Nerve Society (PNS): International scientific society for physicians and researchers focused on peripheral nerve diseases including GBS, CIDP, and MMN. The foundation participates in PNS's Inflammatory Nerve Consortium, making it a clinical and research partner that shapes the scientific agenda relevant to the foundation's patient population.
• American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM): Professional membership association for neuromuscular and electrodiagnostic medicine physicians. The GBS/CIDP Foundation partners with AANEM on education and standards of care and has received its Public Recognition Award, making it a key clinical partner and referral channel rather than direct competitor.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/user/gbscidporg
• Facebookfacebook.com/gbscidp
• LinkedInlinkedin.com/company/gbs-cidp-foundation-international
• Instagraminstagram.com/gbscidpfoundation
• TikToktiktok.com/@gbscidpfoundation
• Xx.com/GBSCIDP

Revenue estimate

Valuation estimate

Number of profiles

Profiles12 records

Funding overview

Funding rounds

Investors

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M&A

Investments1 record

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Frequently asked questions about GBS/CIDP Foundation International