We need your help: Westminster Hall Debate on the UK Strategy for Rare Diseases

Next week, MPs will meet in Parliament to debate the implementation of the UK Strategy for Rare Diseases in England. This is a unique opportunity for us to raise awareness of the problems facing patients and families affected by rare conditions in accessing a timely diagnosis, coordinated care and appropriate treatment. These issues were highlighted in a report recently published by the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions.

We are pleased that Ben Howlett MP, Chair of the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions, has secured this Westminster Hall Debate, which will take place on Tuesday 28 March from 4.30-5.30pm. This opportunity, however, will not come around again.

To make sure enough MPs attend who support the needs of patients and families living with a rare disease, we are asking all our supporters to please e-mail your MP ahead of the event. We have written a template e-mail which you can personalise and send to your MP. This can be downloaded here. If you’re not sure who your MP is, and to find their e-mail address, click here.

The time to act is now

This debate couldn’t come at a more crucial time. Just last week, NICE announced its decision to implement an upper funding threshold for its Highly Specialised Technology Programme, the main route used to evaluate medicines for rare disease patients. If implemented, the plans will significantly affect rare disease patients and their ability to access life-changing treatment, delivered at a time when we should be expanding access routes rather than further limiting them.

Our parent charity, Genetic Alliance UK has called for a pause in implementation of these plans, and for a consultation and impact assessment on the proposals.You can read Genetic Alliance UK’s full response here. In our template letter ahead of next week’s debate, we have also encouraged MPs to ask questions in Parliament to raise awareness about these damaging changes.

We were shocked and appalled by the attack in Westminster yesterday. Our thoughts are with those killed and injured and their families. We applaud the bravery and dedication of those in the emergency services who sought to control the situation and help those killed and injured without thought to their own safety. The debate remains scheduled to go ahead as planned, and on the advice of the Prime Minister for Parliament to resume as normal, we still encourage our supporters to contact their MPs and raise awareness of the importance of implementing the UK Strategy for Rare Diseases for all those affetced by rare, genetic and undiagnosed conditions.

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