UK-- All Party Parliamentary group on rare, genetic and undiagnosed conditions via Rare Disease UK

Contact campaign

We need your help in contacting MPs across the UK to raise awareness of rare, genetic and undiagnosed conditions and to encourage them to join our new All Party Parliamentary group on rare, genetic and undiagnosed conditions.

Download template letters and find out more information below.

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 an 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 can I help?

As their local constituent, you have the most influence over your local politician, so we would be grateful if you could adapt the template letters provided below and email or post them to your local MP. There is room in the letter to inform them about your condition or interest area, so please do take the opportunity.

If you represent a patient organisation please get your members in England, Scotland, Wales and Northern Ireland to send letters too – the more letters we send the more awareness we can raise! Even if you are not part of a patient organisation, please get as many of your contacts with an interest in rare diseases to write to their local politician.

Please see instructions below on how to get in touch with your local politician.

Please remember, when adapting the template letters delete the instruction e.g. “[Insert name of MP]” and remember to change the red font colour back to black.

We would be interested in hearing if you get a response from your politician as this helps us to identify who has an interest in rare diseases which aids us in our political campaigning work.

Can I attend an APPG meeting?

Yes! We would love patient representatives from our membership organisations to attend the meetings. We will send out more information when meetings are announced.

Getting in touch

Please contact your local MP to ask him/her to join the APPG.

You can download template letter here.

You can contact your MP by post or email. If you are not sure who your local MP is, or would like to look up their contact details to email them, you can find this online at:

An easy way to contact your MP is through

Don’t forget to check if your MP signed ‘Pledge for Patients’ which you can do here:

If you have any questions, you are having difficulty finding out who your MP is, or would like some further assistance, please contact Emily Muir, Public Affairs Assistant on ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■ or call 020 7704 3141.