National rare conditions survey launched
Thursday 24th October 2019
Baroness Nicola Blackwood, the Minister for rare disease at the Department of Health and Social Care, has announced a national survey into the issues faced by those affected by a rare condition.
The Government is collecting the views of families and carers, patients, healthcare professionals and industry to inform the next stage in developing a rare disease framework. The current UK Strategy for Rare Diseases comes to an end in 2020.
The aim is to improve the lives of people living with rare conditions. The survey will look to discover the common barriers and challenges that families affected by a rare condition face.
The survey will take between 10 to 20 minutes to complete and will close on 29 November 2019.
You can take part in the survey online.
For parents who are going through the process of trying to get a diagnosis for their child, with advice for those living without a diagnosis.
Search our list of medical conditions, with information about national condition support groups.
Find out about NHS services your child might access.