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Living with an ultra-rare disease is a huge commitment it not only affects the patients but it affects every single person in the family circle no one knows what it is like to have a diagnosis of an Ultra-Rare Disease with in a family unit no one will know until they walk in the shoes of a family who has had a diagnosis of an ultra-rare disease. The Ultra Rare Disease Disorders and Disabilities Foundation wants to see patient's drugs ring-fenced for the life of the patient we also want to see round the clock support for carers and families who are looking after a patient with an Ultra Rare Disease.
We hope you will support our cause we stand up for patients who cannot stand up for themselves we know if it was to happen to a child in our family we would want the best treatment and best care for our child join with us by registering your support and become a member of Ultra Rare Disease Uk you can also show your support by donating to our cause on our site thank you to all our members, help us to stand up for children without a voice
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