Rare Disease UK

Rare Disease UK

A national (UK) alliance for people with rare diseases (termed “orphan diseases” in the US) and their supporters, which was established in 2008 by Genetic Alliance UK, a mega-charity with over 140 organisations supporting patients affected by various genetic conditions, as well as other key stakeholders. Nearly 20% of people with a rare disease suffer from their disease for 5+ years before they’re diagnosed; 10% suffer for a decade.
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Rare diseases are those that affect less than 5 patients per 10,000, as defined in the EU by Rare Disease UK.
A report by Rare Disease UK has found that those living with rare diseases face huge problems; they have little information or support, and there are issues with access to services.
Alastair Kent, chair of Rare Disease UK, said: "Our new reports demonstrate how important it is to listen to patient experience and to use that knowledge to improve services, support and information for patients and families affected by rare diseases.
The report by Rare Disease UK (RDUK) discovered almost 20% of sufferers lived with their conditions for more than five years before they received an accurate diagnosis.
A report by Rare Disease UK (RDUK) found that almost 20% of sufferers lived with their conditions for more than five years before they received an accurate diagnosis.
Rare Disease UK said many patients are facing years of unnecessary delays.
Alastair Kent, chair of Rare Disease UK (RDUK), said: "Many people living with rare diseases and their families have to go through years of medical tests and procedures before an accurate diagnosis can be made.
The event in the House of Commons was organised by Rare Disease UK, which brings together groups and charities to develop a national plan for researching and providing care for people with rare diseases.