New rare condition research opportunity

To gain insights from those living with rare conditions

Department of Health and Social Care (DHSC) and the National Institute for Health Research (NIHR) are working together to carry out the survey to gain insights from people living with rare conditions including what condition they have, their diagnosis, if they have participated in research and their experience with this.

The deadline for the survey is 31 October. It should take around 10 minutes to complete. If you know somebody who has a rare condition and might like to take part, please share the survey with them.

To complete: Rare survey

Alex - The Leukodystrophy Charity