Westminster APPG

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

We work on a variety of issues faced by families and individuals affected by rare, genetic and undiagnosed conditions across the UK. Genetic Alliance UK is the secretariat for this group and we work towards adding the patient voice into debates that matter to our community. The work of this group covers different categories, such as: improving diagnosis, increasing awareness of rare conditions, access to treatments, healthcare and delivery.

What is an All Party Parliamentary Group?

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.

About the APPG on Rare, Genetic and Undiagnosed Conditions.

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.

If you would like to invite your MP to register their interest in the work of this group or become a member, you can use our tool to email them in just a few clicks.

Email my MP

We ask that people encourage their MPs to register their interest in the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed conditions as this is the best way for us to share challenges faced by the rare condition community and raise awareness in Parliament.

Use our template

Timeline

17 April 2024
30 May 2024
Following the dissolution of Parliament on 30 May 2024, the APPG ceased to exist. We hope to re-establish the APPG when the new parliamentary session begins. Read the expenditure statement and report.
16 May 2023
Read minutes from our APPG on care coordination
20 February 2023
Read minutes and annual report and expenditure statement from our APPG on UK Rare Diseases Framework and Action Plans
16 November 2022
Read summary from our APPG on research
27 April 2022
Read minutes from our APPG on diagnosis
23 February 2022
Read minutes from our APPG on Rare Disease Day 2022
7 December 2021
Read minutes from our APPG on the UK Rare Diseases Framework
20 October 2021
Read minutes from our APPG with an update for MPs
9 June 2021
Read minutes and watch recording from our APPG newborn screening
28 April 2021
Read minutes and watch recording from our APPG on access to rare disease medicines
4 November 2020
Read minutes from our APPG on the impact of covid-19
26 February 2020
Read minutes from our APPG on Rare Disease Day 2020
21 October 2019
Read minutes from our APPG on Action for Access
23 July 2019
Read minutes from our APPG on newborn screening
27 February 2019
Read minutes and expenditure statement from our APPG on Rare Disease Day 2019
23 January 2019
Read minutes from our APPG on social care
3 December 2018
Read minutes from our APPG on access to rare disease medicines in England
If you have any questions, or would like some further assistance, please contact Rachel McEleny at [email protected]

Disclaimer
This is not an official website of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in these webpages are those of the group

Following the announcement by Prime Minister, Rishi Sunak, that a general election will be held on 4 July 2024, Parliament was dissolved on 30 May 2024. Subsequently, the APPG ceased to exist. We hope to re-establish the APPG under the new Government.