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.
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.
There are over 40 members from across the House of Commons and House of Lords who are on the APPG. The elected Chair of the APPG, Ben Howlett MP, is supported by Cheryl Gillan MP, Lord Turnberg, Baroness Neville-Jones and Lord Patel as Vice-Chairs.
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.
The APPG has recently launched an inquiry into the implementation of the UK Strategy for Rare Diseases in England. The Strategy is a document that 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.
To support the APPG’s investigation into why this is the case and how it affects patients in England, we need to hear from everyone affected by rare diseases – that includes patients, family members and carers.
We also welcome input from other stakeholders in the rare disease community, including patient representatives and academics. Please see this guidance for more information.
The deadline for evidence submission is Monday 2 January 2017. E-mail submissions should be made to email@example.com with the subject line 'call for evidence'.
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 firstname.lastname@example.org.
Recently, 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.
In May, 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.
If you have any questions, or would like some further assistance, please contact Rosie Collington, Public Affairs Assistant on email@example.com or call 020 7704 3141.
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.