If you are UK based, would you be interested in taking part in a survey?
The Cambridge Rare Disease Network camraredisease.org/ is looking for your views on the value of having a specialist home-care rare disease nursing support service. As the survey goo.gl/Eq8MKs will now only be open for a short period of time please complete it, and share with your networks, as quickly as possible.
Anxiety about advanced disease
Local Support Groups in the UK. 
This disease is so cruel
