Rare, Genetic And Undiagnosed Conditions

Purpose of the group

  • Act as a channel of communication between the Scottish Parliament and families affected by rare, genetic and undiagnosed conditions.
  • Act as a channel of communication between the Scottish Parliament and those working in the fields of research, treatment, care and prevention of rare, genetic and undiagnosed conditions.
  • Monitor and contribute to the implementation of the Scottish Plan for Rare Diseases in Scotland.
  • Identify areas where inequalities exist in provision of care for rare, genetic and undiagnosed conditions and campaigning for improvement.
  • Examine areas of health and social care policy or service provision relating to rare, genetic and undiagnosed conditions.

Forthcoming meetings

Next meeting:

Agendas/Links

Annual Return/Report

Group Officers

Group Members

Organisations

Genetic Alliance UK - secretary

Cystic Fibrosis Trust

Tuberous Sclerosis Association

Turner Syndrome Society

PNH Scotland

British Liver Trust

UKPIPs

Action Duchenne

Funny Lumps

Fragile X Society

The Aarskog Foundation

CSF Leak Association

Behcet’s Syndrome Society

EDS UK

Office for Rare Conditions (Glasgow)

Family Fund

Get involved

Next meeting:

Contact:

natalie@geneticalliance.org.uk

Tel:

Contact

Bob Doris MSP

the Scottish Parliament
Holyrood Road
Edinburgh
EH99 1SP

0131 348 6547

 

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