UCL Queen Square Institute of Neurology



Medline NLM definition for Primary Dysautonomias: Disorders of the Autonomic Nervous System occurring as a primary condition. Manifestations can involve any or all body systems but commonly affect the Blood Pressure and Heart Rate.

Dysautonomia: factsheet from NINDS, the National Institute of Neurological Disorders and Stroke (US site).

Dysautonomia: information from NORD, the National Organization for Rare Disorders (US site).

PubMed Medline search on Dysautonomia.

Support Groups

Dysautonomia International
This non-profit organisation was founded by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia.  Their mission is to identify the causes and cures for all forms of dysautonomia and to enhance the quality-of-life of people currently living with these illnesses. (US site)

DSGB - Dysautonomia Society of Great Britain
This charity is the British chapter of the Dysautonomia Foundation of the USA.  Familial Dysautonomia is also known as Riley-Day syndrome and hereditary sensory and autonomic neuropathy type III. It is a neurodegenerative genetic disorder primarily affecting individuals of Ashkenazi Jewish descent.

Brain and Spine Foundation
Information on living with a neurological condition and on diagnosis. There are publications and resources. The useful glossary of neurological conditions (under 'Information and support') includes links to some other organisations as well as to Brain and Spine Foundation information.

Healthtalk: nerves and brain
Personal experiences of people living with various neurological conditions.

Neurological Alliance
Collective voice for 80 organisations, including stroke and brain injury. Organisations are listed at https://www.neural.org.uk/our-members/, a good place to start if looking for information on those conditions. Site also includes information about living with a neurological condition, a glossary, and information about onset and diagnosis as well as a small set of real life stories.

NHS Inform: brain, nerves and spinal cord 
NHS inform is Scotland's national health information service, with the aim of providing the people in Scotland with accurate and relevant information to help them make informed decisions about their own health and the health of the people they care for.