Sign our open letter to the leaders of the UK's main political parties
It's been almost a year since the publication of the UK Strategy for Rare Diseases and there's been much progress since then - the Implementation Plans for Scotland and Wales have been published and Statements of Intent have been published in England and Northern Ireland. However, this is just the beginning and we still have a long way to go to ensure all 51 commitments within the UK Strategy are implemented in all four nations to ensure better healthcare and health outcomes for patients affected by rare conditions.
The UK Strategy is the first time since the establishment of the NHS that patients and families with rare diseases have a clear and strong commitment from Government to meet their needs. The document is signed by all four health ministers of the UK with support from across the political spectrum. With a General Election fast approaching, it is important that we do not lose traction. That is why RDUK and the Tuberous Sclerosis Association have drafted a letter to raise awareness of the UK Strategy for Rare Diseases and to ask the leaders of the three main political parties (David Cameron, Ed Miliband and Nick Clegg) to reaffirm their commitment to the UK Strategy for Rare Diseases. You can read the letter here.
We are inviting our patient organisations to show their support by adding their logos to our open letter. The deadline for sign-up is 5pm, Wednesday 12 November. After the deadline, we will be sending the open letter to the leaders of the three main political parties as well as our press contacts.
If you are not a patient organisation member, you can still get involved by writing to your patient organisation (if such a group exists) and ask them to show their support. We will also be launching a contact campaign to MPs in the near future so that all RDUK members can get involved and ask their MP to support the UK Strategy for Rare Diseases.
If you have any questions or would like to sign up to the letter, please email Farhana
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http://www.raredisease.org.uk/join-rduk.htm
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