"The NIHR continues to lead essential ongoing research into rare diseases, including through our Biomedical Research Centres, and we are making it easier for people with rare diseases to take part in research opportunities via our Be Part of Research Service, which can now be accessed through the NHS app in England. "By bringing the right people and expertise together, we will be able to provide better care more quickly to those living with rare diseases. "The platform will enable greater collaboration between patients and those working across academic, clinical and industry research. Professor Lucy Chappell, Chief Executive of the NIHR, said: "The UK Rare Disease Platform marks a significant advance in accelerating rare disease research, supported through NIHR funding and our partners the Medical Research Council. "The platform will bring people together, link participants to resources and activities in the UK and internationally, and support projects that deliver advances in rare disease research." Essential ongoing research ![]() ![]() "Although these diseases are diverse and have different causes, they often bring common challenges for research into disease mechanisms, diagnosis, management and treatment. However, that very rarity means it can be difficult to bring the right people, technologies and tools together to develop effective approaches. Professor John Iredale, MRC Executive Chair said: "The UK has great strengths in rare disease research. More than 30% of children with a rare disease die before they are five. ![]() However, there are thousands of these conditions, with around one in 17 people in the UK being affected at some point in their lifetime. A rare disease is one that affects fewer than one in 2,000 people.
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