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The Westminster All-Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions

What is an All-Party Parliamentary Group (APPG)?

All-Party Parliamentary Groups (APPGs) are informal, cross-party, interest groups of MPs and Peers interested in a particular issue.

APPGs do not have any power to make laws and are not funded by Parliament. There is a great number of APPGs, covering many and diverse fields such as health, education, transport, defence, finance, the media, and sports.

What will the APPG on rare, genetic and undiagnosed conditions do?

  • Increase awareness of rare, genetic and undiagnosed conditions in Parliament
  • Help to ensure that patients and families affected by these conditions have access to appropriate care and support
  • Host events for Rare Disease Day and launch relevant reports & research
  • Connect MPs (and Lords) with the issues that matter to their constituents

How many MPs & Peers are interested in this APPG?

40 MPs and Peers have expressed interest in the group.

Who are the groups officers?

Ben Howlett MP is chair of the APPG, supported by Cheryl Gillan MP, Baroness Pauline Neville-Jones, Lord Patel and Lord Turnberg as Vice-Chairs.

When was the first meeting held?

The inaugural meeting of the APPG on Rare, Genetic and Undiagnosed conditions was held on Thursday 11 February 2016.

Who is the groups secretariat provided by?

Genetic Alliance UK provides secretariat to the group.

If you have any questions, or would like some further assistance, please contact Emily Muir, Public Affairs Assistant on emily.muir@raredisease.org.uk or call 020 7704 3141.

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