Useful websites

Action for ME

Action for M.E. works to end the ignorance, injustice and neglect faced by people with the chronic neurological condition myalgic encephalomyelitis (M.E.), sometimes diagnosed as chronic fatigue syndrome (CFS, or M.E./CFS).

Alongside providing information, support and advice to people to help improve their health and well-being, Action for M.E. works with professionals to enhance the care and support that people with M.E. receive and funds pilot research projects to advance knowledge of the illness.

Arrhythmia Alliance the Heart Rhythm Charity

For support and information on arrhythmias, tachycardia and inappropriate sinus tachycardia.  Downloadable fact sheets available. 

Cheltenham Syncope clinic

Cheltenham Syncope Clinic, led by Dr Arnold Deering, is part of Gloucestershire Hospitals NHS Foundation Trust and was set up in 1992.

Ehlers-Danlos Support Group

Supporting people with all types of Ehlers-Danlos Syndrome

Hughes Syndrome Foundation

For support and information about Hughes syndrome, known medically as the antiphospholipid syndrome (APS). Includes a directory of over 100  APS specialists throughout the UK plus downloadable fact sheets.

Hypermobility Syndromes Association

HMSA provides: 

• Support and information to those affected and to the medical community
• A helpline number 033 3011 6388
• A network of local support groups throughout the UK 
• Advocacy on a case by case basis for HMSA members
• Supports research into the various hypermobility syndromes

Lyme Disease Action

Lyme Disease is a known secondary cause of PoTS.

Stickman Communications

Wonderful cartoon books with illustrations of living life with PoTS and EDS From each  purchase, a donation is made to the Association of Young People with ME  and The Hypermobility Syndrome Association.Hannah has also started a blog. You can keep up to date with her latest cartoons here

Specialised Healthcare Alliance

The Specialised Healthcare Alliance (SHCA) is an independent organisation made up of patient groups and supported financially by industry. It was established 10 years ago and campaigns on behalf of patients with rare or complex medical problems (whether they currently benefit from specialised commissioning or not). One of the roles of the SHCA is to try to influence specialised commissioning for the benefit of patients with rare or complicated problems.

Special Needs Jungle

Parent-led information, resources, informed opinion about children and young people with SEN, special needs, disability, health conditions and rare diseases

Syncope Trust And Reflex Anoxic Seizures

STARS offers support to individuals and their family and friends who are affected by blackouts, PoTS and IST.They also provide information to medical professionals.

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International Organisations

Dysautonomia Information Network (DINET)

Based in the USA, DINET aims to provide information about various types of dysautonomia and has a particular emphasis on PoTS. They offer comprehensive information, stories and a discussion forum with an international membership.

Dysautonomia International

This USA organisation aims 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.

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DISCLAIMER

Links to other websites are provided for your information only. We have no control over the content of their websites or the organisation that supports it. Inclusion of link does not imply that we endorse the website’s owner organisation or website content.