I saw this rare disease survey earlier in August, and have completed it myself.
Rare Disease UK (http://www.raredisease.org.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. https://www.surveymonkey.com/r/rduksurvey