Rare disease useful contacts

Supporting people with genetic, rare and undiagnosed conditions in the UK.

Website: Genetic Alliance UK

E-mail:[email protected]

Phone: 0300 124 0441

The national campaign for people with rare conditions and all who support them.

Website: Rare Disease UK - Genetic Alliance

E-mail: [email protected] 

Phone: 0300 124 0441

A dedicated support network in the UK for families affected by a syndrome without a name - a genetic condition so rare it often remains undiagnosed.

Website: SWAN UK (Syndromes Without a Name) - Genetic Alliance

E-mail:[email protected]

Phone: 0300 124 0441

Unique is a registered charity. The mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder, copy number variant or single gene disorder associated with learning disability / developmental delay and raise public awareness.

Website: Understanding Rare Chromosome and Gene Disorders

E-mail:[email protected]

Phone: 01883 723356

The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers.

PALS provides help in many ways. For example, it can:

• help you with health-related questions

• help resolve concerns or problems when you're using the NHS

• tell you how to get more involved in your own healthcare

• give you information about the NHS

• give you information on the NHS complaints procedure, including how to get independent help if you want to make a complaint

• give you information on support groups outside the NHS

• help to improve the NHS by listening to your concerns and suggestions.

Website: What is PALS (Patient Advice and Liaison Service)? - NHS