Global Patient Information Resources:

GBS | CIDP Foundation International: The GBS|CIDP Foundation International is the preeminent global non-profit organization supporting individuals and their families affected by Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related syndromes such as multifocal motor neuropathy (MMN) through a commitment to support, education, research, and advocacy.

The Foundation for Peripheral Neuropathy: Our mission is to dramatically improve the lives of people living with Peripheral Neuropathy.

CMTA: “A World Without CMT”: That’s the CMTA’s vision, and the driving force behind our mission. 

Hereditary Neuropathy Foundation: mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support patients and families with critical information to improve quality of life, and fund research that will lead to treatments and cures.

Canada Patient Information Resources:

GBS | CIDP Foundation of Canada: GBS/CIDP Foundation of Canada improves the quality of life for individuals and families affected with GBS, CIDP & Variants.

US Patient Information Resources:

Neuropathy Alliance Texas: Neuropathy Alliance of Texas’s mission is to empower the neuropathy community to live their best lives and to support neuropathy research.

UK Patient Information Resources:

Brain and Spine Foundation: neuropathic pain treatment information

The Brain Charity: Offers emotional support, practical help, and social activities to anyone with a neurological condition and to their family, friends and carers.  Includes practical telephone and email advice on welfare benefits

CMT-UK: Extensive information about CMT diagnosis and treatment.  Additional information available for members include publication library, archives of news and member-only events.

Diabetes UK diabetic neuropathy site

GAIN (Guillain-Barré and Associated Inflammatory Neuropathies): Help and advice on inflammatory neuropathies for patients and their relatives including a telephone helpline for residents of UK and Ireland.   Includes links to downloads on GBS in adults and in children, CIDP, anti-MAG neuropathy, IVIg and immunisations

Muscular Dystrophy UK: Not only providing information on muscular dystrophies, but also on neuropathies that cause muscle weakness, like CMT and factsheets with a wide range of relevant information – from psychological and social issues to equipment and adaptations.

Motor Neurone Disease Association

Neurological Alliance: A collective voice for 80 organisations working together for people in England with neurological conditions.

Pain Concern: Information (via various media platforms) and support on all aspects of pain. Includes leaflets on neuropathic pain, self-management  of foot pain and sleep. Also has audio podcasts and Twitter and Facebook feeds.

Chartered society of Physiotherapy: neuropathy section Includes links to papers on the role of physical activity in painful diabetic neuropathy and thoracic outlet syndrome.

British Polio Fellowship: A charity dedicated to helping people in the UK living with the late effects of Polio and Post Polio Syndrome.  Information sheets on what this condition is and how to manage it.

Vasculitis UK: A comprehensive discussion of vasculitis for patients and professionals  - including neuropathy and treatment recommendations.

 

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