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WE NEED YOUR HELP: Westminster Hall Debate

Posted: 23.03.17

UDKUMonr_400x400Next week, MPs will meet in Parliament to debate the implementation of the UK Strategy for Rare Diseases in England. This meeting represents a massive opportunity for our shared rare disease community to raise further awareness of rare diseases and the impact they have on the lives of patients and their families. Certain issues in particular will be raised, such as; access to timely diagnosis for those affected by rare conditions, the facilitation of coordinated care and appropriate treatment, and many others others. These are crucial issues and difficulties which affect the NPUK community directly on a daily basis, so we cannot allow them to be simply ignored.

Ben Howlett MP, Chair of the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions, has successfully secured the one of a kind Westminster Hall Debate, which will take place on Tuesday 28 March from 4.30-5.30pm. However we need there to be as much impact as possible if there is to be positive change…and so to achieve this we need to ensure enough MPs attend.

It is crucial that we get our MPs to stand up and show that they support the needs of patients and families living with a rare disease, which is why we are asking the NPUK community and its many supporters, to please e-mail your MP ahead of the event to ensure their support and subsequent attendance!

RDUK have written a template e-mail which you can personalise and send to your MP. This can be downloaded here. Don’t worry if you’re not sure who your MP is – you can find their e-mail address, by clicking here.

We need to act NOW: 

NICE recently announced its plans of an upper funding threshold for its Highly Specialised Technology Programme, which is the main route used to evaluate medicines for rare disease patients. If put into practice, this damaging decision 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. This is why this debate couldn’t come at a more crucial time, and why we need your help. 


Rare Disease UK’s 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.