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Found 11 results
  1. News Article
    Patients in England can get early access to more cutting-edge medicines through a new fund. The Innovative Medicines Fund (IMF) works like the existing Cancer Drugs Fund (CDF), fast-tracking promising treatments, even if they are expensive and have not yet been approved for routine NHS use. It will cover potentially life-saving drugs for rare and genetic diseases. The government has allocated up to £680m a year to be shared by the funds. The IMF, like the CDF, will mean a newly approved medicine could be prescribed immediately, before final recommendations on it are drawn up by
  2. Content Article
    There are more than 7,000 rare diseases, affecting an estimated 3.5 million people in the UK. Their complex nature means it is difficult for healthcare professionals to receive training on every condition or for patients to access the relevant specialist. People living with rare diseases, such as muscular dystrophies or Huntington’s disease, can go through multiple appointments and referrals before a diagnosis is made due to the complexity of conditions, making it difficult for individuals and their families to coordinate their care. The action plan, published today, includes 16 comm
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    There is a substantial need for continued research and renewed policy focus into rare diseases. As such, the report makes five recommendations. Implementing these recommendations will help to improve the lived experiences of rare disease patients: Recommendation one: Review and refresh the UK Strategy for Rare Diseases before the end of 2020. The strategy has become obsolete as technologies, policies and systems have moved on. Its commitments urgently need updating to ensure rare disease patients receive high quality services, treatment and support regardless of where they live in the UK
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  10. Event
    This conference will discuss the next steps for rare diseases policy in the UK, looking at priorities going forward for the Rare Diseases Framework, the role of genomics in improving diagnosis and care, and the future for research, treatment access, and system preparedness. Taking place following the publication of the Rare Diseases Framework earlier this year, delegates will discuss the first year of its delivery, the impact of the pandemic, and the key priorities for delivering ambitions within the framework over the next year. It will also be an opportunity to look at the impact o
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