DRAFT

United Kingdom

All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions (APPG) – Westminster Parliament.

The APPG on Rare, Genetic and Undiagnosed Conditions held its Annual General Meeting in February 2019. The aims of the group, agreed by members, are to increase awareness of rare, genetic and undiagnosed conditions in parliament and help ensure that patients and families affected by these conditions have access to appropriate care and support.

The APPG provides a useful forum for parliamentarians to meet patients and families, who are often vital to converting complicated and abstract debates to the everyday reality of people’s lives. It also provides the opportunities for MPs to learn about the many similar issues facing patients and their families. The APPG helps to give patients affected by rare, genetic and undiagnosed conditions a voice in parliament.

There are over 40 members from across the House of Commons and House of Lords who are on the APPG. In January 2019, the APPG held its Annual General Meeting and elected Catherine West MP as Chairs, Rt Hon Dame Cheryl Gillan MP, Lord Turnberg, Rt Hon Baroness Neville-Jones and Lord Patel as Vice-Chairs and Alex Sobel MP and Rt Hon Norman Lamb MP as officers. Info on their site is out of date but contact info OK.

Cross Party Group for Rare, Genetic And Undiagnosed Conditions (CPG) – Scottish Parliament.

The CPG Acts as a channel of communication between the Scottish Parliament and families affected by rare, genetic and undiagnosed conditions. Acts 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.

It identifies areas where inequalities exist in provision of care for rare, genetic and undiagnosed conditions and campaigning for improvement and examines areas of health and social care policy or service provision relating to rare, genetic and undiagnosed conditions.

Autoinflammatory UK are represented on this Group by a member living in Scotland.

Rare Disease UK

Rare Disease UK is the national campaign for people with rare diseases and all who support them. They provide a united voice for the rare disease community by capturing the experiences of patients and families.

They work with their supporters to raise the profile of rare diseases across the UK and seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases.

Rare Disease UK is working with health departments across the UK to implement the UK Strategy for Rare Diseases to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support.

Rare Disease UK is a campaign run by Genetic Alliance UK, the national charity of over 200 patient organisations, supporting all those affected by genetic conditions.