The UK’s first strategy to help build understanding of rare diseases and boost research to find effective treatments and therapies was launched by Health Minister Lord Howe today.
The UK Rare Diseases Strategy aims to ensure that none of the three million people in the UK who are affected by rare diseases are left behind.
For the first time, it sets out a UK-wide vision for building on our reputation as a world leader in rare disease research, including revolutionary genomic research to help transform diagnosis and treatment.
Key elements of the strategy include:
- a clear personal care plan for every patient that brings together health and care services, with more support for them and their families
- support for specialised clinical centres to offer the best care and support
- better education and training for health and social care professionals to help ensure earlier diagnosis and access to treatment
- promoting the UK as a world leader in research and development to improve the understanding and treatment of rare diseases
- Full press release: UK Government Department of Health
22 Nov 2013
- Attachment, PDF, 1.88MB, 40 pages.
Is DES a rare disease? How much do you know about DES?
- OrphaNet, Diethylstilbestrol syndrome, ORPHA1916.
- DES studies on cancers and screening.
- DES studies on epigenetics and transgenerational effects.
- DES studies on fertility and pregnancy.
- DES studies on gender identity and psychological health.
- DES studies on in-utero exposure to DES and side-effects.
- DES studies on the genital tract.
- Papers on DES lawsuits.
- DES videos and posts tagged DES, the DES-exposed, DES victims.
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