The new ‘Rare Disease Framework’, to replace the current UK Strategy for Rare Diseases, will shortly be launched. We all hope that it will help improve inequality across the country, diagnosis, research and coordination of care to name a few.
Genetic Alliance UK need to understand (baseline now) the detail of your experiences as a rare disease patient or carer, so that they can detect future changes brought about by the framework; and then lobby for further improvements (with evidence).
The survey is designed to capture the experience of patients affected by rare conditions and their carer. It should take no more than 30 minutes to complete.
Who can take part?
You must live in the UK and be aged 18 or over. You can be a:
1. Patient living with a rare or undiagnosed condition
2. Carer of a patient living with a rare or undiagnosed condition, giving the patient’s views or
3. Carer of a patient living with a rare or undiagnosed condition, giving your own views.
A Carer could be a parent or relative.
To set the baseline, please complete their survey here: bit.ly/patientexperience2020
(The survey closes on 31st July - so please complete as soon as possible)
[Further detail on the Genetic Alliance UK site, should you wish, can be accessed here: geneticalliance.org.uk/news...]
Many thanks.
Tony
Chair Behçet’s UK
does very Behcets patient have a specialist??
Behcet's Eh?
controlling diet might help
Where to get a diagnosis
