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Rare, Genetic and Undiagnosed Conditions

This Cross-party group's purpose:

  • 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.

Next meeting

Tuesday, January 18, 2022

This meeting will be held virtually at 12.30pm, anyone wishing to attend must contact Natalie Frankish.

Get in touch

If you want to get in touch, you can contact Natalie Frankish

Address:

Involved in the group

MSPs, individuals and organisations who participate in and support this group.

Current Members

Doris, Bob

Bob Doris

Convener

Party: Scottish National Party

MSP for: Glasgow Maryhill and Springburn (Constituency)

McLennan, Paul

Paul McLennan

Deputy Convener

Party: Scottish National Party

MSP for: East Lothian (Constituency)

Briggs, Miles

Miles Briggs

Member

Party: Scottish Conservative and Unionist Party

MSP for: Lothian (Region)

Gray, Neil

Neil Gray

Member

Party: Scottish National Party

MSP for: Airdrie and Shotts (Constituency)

Mochan, Carol

Carol Mochan

Member

Party: Scottish Labour

MSP for: South Scotland (Region)


Organisations

Genetic Alliance UK - secretary

Alternating Hemiplegia of Childhood UK (AHC UK)

Autoimflammatory UK

Behcet's UK

British Liver Trust

CHAMP 1

Children's Health Scotland

EDS UK

Haemophillia Scotland

HSP Support Group

MyAware

NLRP12

Office for Rare Conditions

PNH Scotland

PSP Association

Rare Disease Nurse Network

The Aarskog Foundation

The Smith-Magenis Syndrome (SMS) Foundation

Turner Syndrome Support Society

Group work

Annual return / report

Annual return / report