Huntington's Disease Association

The Huntington's Disease Association (HDA) is a charity that supports people in England and Wales affected by the genetic neurodegenerative brain condition Huntington's disease (HD).

Huntington's Disease Association
Founded1986
FocusCare and support for people affected by Huntington's disease
Location
  • Liverpool, England
Area served
England and Wales
Key people
  • Cath Stanley (CEO)
  • Tony Hadley (patron)
  • Shane Richie (patron)
  • George Rainsford (patron)
Websitewww.hda.org.uk

The HDA was founded in 1986 and is based in Liverpool.[1] It supports a network of regional care advisors who offer care and support to people with and at risk of Huntington's disease and their families. The HDA also has a research programme that supports scientific and social research into HD.[2] It has worked to establish and support a network of multidisciplinary clinics for HD patients in the UK.[3]

The charity was instrumental in the 2010 launch of an All-Party Parliamentary Group for Huntington's disease in the UK Parliament, chaired by Lord Walton of Detchant, and 2010 research revealing that the prevalence of HD is much higher than previously thought.[4][5]

The HDA won the 2005 UK Charity Award for healthcare and medical research[3] and the 2005 National Health Service (NHS) Health and Social Care Award for long term conditions.[6]

The HDA's patrons are singer Tony Hadley and entertainer Shane Richie.[7]

The HDA is part of the UK HD Alliance, along with the Scottish Huntington's Association and HD Association Northern Ireland.[7] It is also a member of the International Huntington Alliance.[8]

References

  1. "Huntington's Disease Association". Companies House. Retrieved 10 December 2011.
  2. "Regional Care Advisors". HDA. Retrieved 10 December 2011.
  3. "2005 winners". Charity Awards. Archived from the original on 19 April 2013. Retrieved 10 December 2011.
  4. Rawlins, M (23 October 2010). "Huntington's disease out of the closet?". Lancet. 376 (9750): 1372–3. doi:10.1016/S0140-6736(10)60974-9. PMID 20594589.
  5. Silverman, Rosa (30 June 2010). "Huntington's Disease cases 'under-estimated'". Independent. Retrieved 10 December 2011.
  6. "2005 Health and Social Care Awards". NHS. Retrieved 10 December 2011.
  7. Lomas, Clare (11 June 2009). "Tony Hadley and Shane Richie named Huntington's Disease Association's new patrons". Nursing Times. Retrieved 10 December 2011.
  8. "List of member organisations". IHA. Retrieved 10 December 2011.


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