Month: November 2019

We would like your views on your PCD treatment and to understand how you cope with daily stressors and the support you have from friends and family. The survey takes 30-45 minutes to complete and questions ask about your wellbeing over the past 2 weeks. If you are 18 or over: for more information and

Follow this link to find out more and take the survey – the deadline for responses is Friday 29 November.   In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a ‘national conversation’ on rare disease. This conversation aims to gather a range of views from the rare