So close to the referendum date, over two dozen patient groups have come together to write an open letter to draw attention to the great many benefits the EU brings for health care and modern treatments.
As representatives of rare-disease patient organisations, we would like to make known to the wider public the huge benefit that we see in EU membership for rare-disease patients right across the UK.
The EU’s active promotion and funding of research networks, medicine regulation, public health protection, employment protection for the disabled, infrastructure for medical advancement and cross-border patient networks have all helped secure a better quality of life for citizens living with rare-diseases.
Within the field of rare-diseases, experts as well as patients themselves may be geographically distant. This can make disorders difficult to diagnose, research harder to initiate and cures less cost-effective to develop. This is even more acute in smaller EU countries but is a major issue even for the UK. By banding together through common EU mechanisms, our countries share funds, data, resources, ideas, policy and infrastructure to tackle health issues that require collaboration on an international scale. The European Medicines Agency, based in London, streams treatment approvals from 28 countries into one process. We have built so much together to help our patients. Leaving would disempower that caring, collaborative force for good. It would slow the progress being made through EU collaboration towards better diagnoses and more effective therapies for the people we represent, and would risk closing down some of the most cutting-edge clinical trials currently happening in the UK.
These are the personal views of the signatories below.
|Alastair Kent OBE||Director||Genetic Alliance UK|
|Fiona Lawrence||Director of Research and Clinical Development||Duchenne UK|
|Emily Crossley||Co-founder||Duchenne UK|
|Mrs Alexandra Johnson||Chief Executive||Joining Jack|
|Anne Lennox||Chief Executive||Myotubular Trust|
|Miss Sara Hunt||Chief Executive||ALD Life|
|Mr Oliver Timmis||Chief Executive||Cambridge|
|Mrs Carlee Gilbert||Director||ChILD Lung Foundation|
|Mrs Nichola Ejaz||Chairperson||Dancing Eye Syndrome Support Trust|
|Ms Flra Raffai||Executive Director||Findacure|
|Mr Chris Bedford-Gay||Chairman / Trustee||FOP Friends|
|Mr Nick Child||Chairman||Child Growth Foundation|
|Ms Susan Passmore||Chief Executive||Prader-Willi Syndrome Association UK|
|MRS PHILLIPPA FARRANT||Deevelopment Officer||Duchenne Family Support Group|
|Mrs Lisa Flint||Founder & Managing Director||The AADC Research Trust Children's Charity|
|Miss Stephanie Carr||Student||Newcastle upon Tyne|
|Mrs Julia Carr||Mother||Newcastle Upon Tyne|
|Rachael Stevenson||Co-founder and Executive Director||Reverse Rett|
|Dr David Miller||Chair, Board of Trustees||Ciliopathy Alliance|
|Miss Elizabeth Greally||Research Assistant||Institute for Genetic Medicine, Newcastle University|
|Rev. Martin Short||Chairman||Tuberous Sclerosis Association|
|Mr. Yann Le Cam||Chief Executive||EURORDIS|
|Mr. Terkel Andersen||President||EURORDIS|
|Dr. Chris Sotirelis||Patient Advocate||EURORDIS|
|Kate Ryan||Consultant Haematologist for Haemoglobin Disorders||Manchester|
|Ms Jane Fisher||Chief Executive||Antenatal Results and Choices (ARC)|
|Terence Hoey||Chief Executive||The Ultra Rare Disease Disorders & Disabilities Foundation (Belfast) Northern Ireland|