Why we need an APPG on rare, genetic and undiagnosed conditions
Last Reviewed 13/08/2015
By Emily Muir
Genetic Alliance UK, together with our initiatives SWAN UK and Rare Disease UK, are campaigning for the establishment of an APPG for rare, genetic and undiagnosed conditions.
To ensure the group is successful, we need as many MPs and Peers to sign up, and be active members, as possible.
We’re asking you and your members to get involved by contacting your respective MPs. As their local constituents, you have the most influence over your respective parliamentarians. The more MPs that are engaged in the work of the group, the more opportunity we have 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, which you can adapt to reflect your personal experience before sending to your MP. You can find out who your MP is and how to contact them here.
Don’t forget to let us know if your MP gets back to you. To do this you can contact our 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 is a great number of APPGs, covering many and diverse fields such as health, education, transport, defence, finance, the media, and sports.
What we hope to gain from 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 our Public Affairs Assistant, Emily.