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All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions

28 August 2015

Genetic Alliance UK, together with their initiatives SWAN UK and Rare Disease UK, are planning to set up an APPG for rare, genetic and undiagnosed conditions.

To ensure the group is successful, they need as many MPs and Peers to sign up, and be active members, as possible.

They’re asking people to get involved by contacting their respective MPs. The more MPs that are engaged in the work of the group, the more opportunity there is to raise awareness, influence change, and work together to improve the lives of individuals affected by rare, genetic and undiagnosed conditions.

It will only take just a few minutes to adapt the template letter, to reflect your personal experiences before sending it to your MP. You can find out who your MP is and how to contact them here.

Don’t forget to let Genetic Alliance know if your MP gets back to you. To do this, you can contact their Public Affairs Assistant, Emily.

What is an 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 are a great number of APPGs, covering many and diverse fields such as health, education, transport, defence, finance, the media, and sports.

What Genetic Alliance hope to gain from having an APPG on rare, genetic and undiagnosed conditions:

  • 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

If you have any other questions or comments about this work please contact the Genetic Alliance UK's Public Affairs Assistant, Emily