The UK has recently began the practice of the new UK Rare Disease Framework, a government effort that aims to spread awareness, quicken the diagnostic process, and improve treatment and care for rare conditions. It stands to help over 3.5 million people throughout Northern Island, England, Wales, and Scotland.
About the Framework
Rare disease research and documentation can often be difficult to find and access, leading to low levels of awareness, issues with diagnoses, and poor care. To combat these problems, the four countries of the UK have come together to create the UK Rare Disease Framework.
They took patient and caregiver experiences and opinions into consideration during the development of the program with the hope of improving the experiences of rare disease patients. The National Conversation on Rare Diseases, a survey that focuses on the challenges that rare disease patients encounter, played a large role in patient input. In the end, more than 5,000 responses were recorded, all from a patient, caregiver, or family member.
The framework consists of four key priorities:
- Raise awareness of rare diseases among medical professionals
- Establishing measures that lead to faster diagnosis
- Improve how patient care is coordinated
- Expand access to treatments and specialized care
Hopefully this new program will allow for a better experience for rare disease patients.
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