[Insert your address]

[Insert name of your local MP] MP

House of Commons

London

SW1A 0AA

[Insert date]

Dear [insert name of MP],

All party parliamentary group on rare, genetic and undiagnosed conditions

I am/we are writing to you as my/our MP to ask you to join the All Party Parliamentary Group on rare, genetic and undiagnosed conditions.

Rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Many of them are progressive, meaning that the health and quality of life for affected individuals will continue to deteriorate throughout their lives and many of those affected will die prematurely. The vast majority of rare and genetic conditions cannot be cured and most have no effective treatments. Patients and families [such as myself] frequently experience delays in gaining an accurate diagnosis for their or their loved one’s condition, and can struggle to access appropriate care and support.

[You might like to insert some information here about your interest in rare disease e.g. do you represent a patient organisation, do you or a family member have a rare disease. Are you a clinician dealing in rare diseases etc. Please try and limit your story to a paragraph or two as it can be followed up with more information should your MP show an interest]

I am / My relative is unlikely to be your only constituent who is affected by a rare, genetic or undiagnosed condition. They are a significant cause of illness - 1 in 17 people will be affected by a rare condition at some point in their life (that’s approximately 5,000 people in our constituency alone) and 4 in 100 babies in the UK are born with a genetic condition.

[If your MP signed pledge for patients please keep this paragraph -You can check if they signed here: http://www.pledgeforpatients.org.uk/] I/we greatly value the support you have shown to the rare disease/undiagnosed community. As your constituent I would like to take this opportunity to personally thank you for signing ‘Pledge for Patients’. As you will recall, when you signed ‘Pledge for Patients’, you committed to: promote the implementation of the UK Strategy for Rare Diseases throughout the UK, press for improved diagnosis opportunities for families with undiagnosed conditions and to work to bring down the barriers preventing the uptake of innovation by the NHS. The work of the APPG will address these issues so I/we hope that you will find it a useful tool in your work to help progress these three commitments.

The key aims of the APPG will be to increase awareness of rare, genetic and undiagnosed conditions in parliament and help to ensure that patients and families affected by these conditions have access to appropriate care and support.

The charity Genetic Alliance UK will be providing secretariat to the APPG, so please get in touch with them by emailing or by calling 020 7704 3141, so that they can provide you with additional information.

I/we hope that you will join the APPG and dedicate a small fraction of your time to what is an exceptionally important subject.

I/we look forward to your response.

Yours sincerely,

[Insert name]

[Insert role and organisation if appropriate]

Please note: if you require any further information about the APPG please contact Emily Muir at Genetic Alliance UK, .