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.
Timeline
- Minutes from the hearing on Tuesday 15 November
- Our summary of the hearing on Tuesday 15 November
- Minutes from the hearing on Monday 7 November
- Our summary of the hearing on Monday 7 November
- Minutes from the hearing on Tuesday 1 November
- Our summary of the hearing on Tuesday 1 November
- Overview of all three hearings
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