Patient organization / disease alliance

GBS/CIDP Foundation International

GBS/CIDP Foundation International supports people affected by Guillain–Barré syndrome, chronic inflammatory demyelinating polyneuropathy and related conditions. Its work combines patient support, education, research and advocacy through an international community of patients, families and professionals.

Official website ↗

Organization profile

Organization type: Patient organization / disease alliance
Headquarters / base: Conshohocken, Pennsylvania, United States
Geographic scope: International

Former / alternate names

Guillain–Barré Syndrome Foundation International
Guillain–Barré Syndrome Support Group

Medical focus

Peripheral neuropathyRare diseasesPatient supportNeurological disorders

Activities

Peer supportPatient and professional educationResearch fundingAdvocacyResource navigation

Population served

People with GBS or CIDPPeople with related neuropathiesFamiliesCaregivers

Support built around patients and families

The foundation’s mission covers Guillain–Barré syndrome, CIDP and related conditions such as multifocal motor neuropathy. Its network connects patients and caregivers with volunteers, healthcare professionals and educational information. This work addresses the experience of living with a rare neurological condition as well as the need to understand care.

Its national office is in Conshohocken, Pennsylvania, while its support and educational activities have an international scope. A local support contact in a community directory therefore does not represent the foundation’s headquarters.

Sources: [1], [4].

Navigation, research and advocacy

The Health Navigator programme helps patients and families identify resources related to insurance, financial assistance, disability benefits, adaptive equipment, care transitions and other support needs. The service provides a point of contact for navigating questions that can arise alongside medical treatment.

The foundation also funds research and educational opportunities and works with policymakers on matters affecting its patient community. These activities sit alongside peer support, with different roles for patients, clinicians, researchers and advocates.

Sources: [1], [3].

From Guillain–Barré support to a broader foundation

The organization’s history begins with a support group founded in 1980 by Estelle and Robert Benson. Its own historical account records a 2005 change from Guillain–Barré Syndrome Foundation International to a name that also includes CIDP, reflecting the growing participation of people with that condition.

The earlier Guillain–Barré Syndrome Foundation name reflects the organization’s original disease focus. Its later name brings GBS and CIDP together while its education and support programmes also address other acquired peripheral neuropathies.

Sources: [2].

Further health reading

Campylobacteriosis

The foundation’s medical advisory board discusses Campylobacter infection as a recognized trigger of Guillain–Barré syndrome. This article explains that infectious background.

Multiple sclerosis

The foundation’s rehabilitation guide distinguishes GBS and CIDP from multiple sclerosis. This article explains MS as a central-nervous-system condition, helping readers understand that difference.