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

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 APPG on Rare, Genetic and Undiagnosed Conditions held its inaugural meeting in February 2016. 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.

There are over 40 members from across the House of Commons and House of Lords who are on the APPG. In February 2017, the APPG held its Annual General Meeting and re-elected Ben Howlett MP as Chair, and Cheryl Gillan MP, Lord Turnberg, Baroness Neville-Jones and Lord Patel as Vice-Chairs.

  • Minutes from the Annual General Meeting, 28 February 2017

What will the APPG be working on in future?

Looking further ahead, the APPG will hold events on genome editing to engage parliamentarians on issues relating to emerging technologies in health and hearing from patients whose stories can often bring context to technical, ethically complex and sometimes abstract discussions. The APPG will work in collaboration with other groups including the APPG for Medical Research and APPG on Personalised Medicines.

For more information about our work in this area, and to find out how you could get involved, e-mail Rosie Collington, Public Affairs Assistant, on rosie.collington@geneticalliance.org.uk.

What has the APPG worked on so far?

Report on the implementation of the UK Strategy for Rare Diseases in England

The UK Strategy for Rare Diseases was published in November 2013 and sets out 51 commitments that, if implemented, will provide those living with rare conditions with the highest possible quality of evidence-based care and treatment, regardless of where they live in the UK. The four countries of the UK have until 2020 to implement the 51 commitments outlined in the Strategy. In order to help put these into action, each country agreed to develop its own implementation plan by February 2014. The departments of health in Scotland, Wales and Northern Ireland have all published country specific plans that reflect their respective health service structures and priorities. The Department of Health in England has not developed or coordinated a plan.

In October 2016, the APPG launched an inquiry into the implementation of the Strategy in England. On Rare Disease Day 2017, it published Leaving No One Behind: Why England needs an implementation plan for the UK Strategy for Rare Diseases.

Hearings with the Department of Health and its arm's length bodies

As part of its inquiry into the implementation of the Strategy in England, in November 2016, the APPG hosted a series of hearings with patient representatives, the Department of Health and its arm's length bodies:

Access to medicines

On 11 October 2016, the APPG held a hearing on access to medicines. This was an opportunity to hear from rare disease patients, patient representatives, clinicians and industry experts to understand the issues they face in accessing medicines for patients affect by rare conditions within the current system in England.

Undiagnosed Conditions

In May 2016, the APPG launched its first report exploring the experience of families who have received a diagnosis via genome sequencing. This was a timely report given that genome sequencing is becoming quicker and cheaper with every passing week; receiving a diagnosis through sequencing is now a reality for families. The report was launched at an event in parliament, and the then minister in charge of rare diseases, George Freeman MP, received the report.

 

How you can get involved

  • You can respond to the APPG inquiry into the implementation of the UK Strategy for Rare Diseases in England.
  • Ask your local MP to get involved with the APPG on Rare, Genetic and Undiagnosed Conditions.
  • Keep up-to-date on the activities of the APPG via the Genetic Alliance UK website. You can also follow our work supporting the implementation of the UK Strategy for Rare Diseases by signing up to Rare Disease UK campaign updates here.

If you have any questions, or would like some further assistance, please contact Rosie Collington, Public Affairs Assistant on appg@geneticalliance.org.uk or call 020 7704 3141.

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.

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