Saturday, 22 August 2015

UK Rare Disease Survey open till sept.

I saw this rare disease survey earlier in August, and have completed it myself.

Rare Disease UK ( last did a survey which was published in 2010 and have one open now for completion by anyone who cares for, or is affected by, a rare or undiagnosed disease.

The survey takes between half an hour and an hour to complete, depending on how much information/detail you put in. The survey is open until September, so there are a few weeks left for your contributions.

Rare Disease UK is the body which is:

  • Campaigning for a UK Strategy for Rare Diseases
  • Capturing the experience of the rare disease community to inform policy
  • Providing a united voice for the rare disease community
  • Raising the profile of rare diseases
  • Supporting the rare disease community

Completing this survey add another voice to the collection and may help shape policy/strategy in the future.

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