Help us create an r(20) Patient Statement

Dave our newest volunteer and Allison are attending a ‘Think Research!’ event in March organised by NIHR. We’ve been asked to produce a Ring20 ‘Patient Statement’ to help shape future rare-disease research, but we need your help to do this…please tell us in your comments on this post what Research you would like for Ring20 i.e. what’s most important to you?
We need your comments by end Feb…
Here’s a little more background:
What is a Patient Statement?
This is your opportunity to tell researchers and funders about the kind of research you, other patients and the rare-disease community would like to see. What improvements, drug developments or simply good ideas do you think could make a real difference to the healthcare and well-being of people living with rare diseases?
What NIHR will do with your Statements
NIHR will format your statements for display on the giant screen during the Think Research event and for sharing via Social Media channels. NIHR will also pass on a copy for you to use on your own media channels for the event.
But NIHR won’t stop there. NIHR want to take your contributions to the wider research community – and NIHR want to make sure they listen.
NIHR will pass on every one of your patient statements to research funders and organisations involved in rare disease research, including NIHR funding streams and the Department of Health & Social Care.
Together, the patient statements will play an important role in influencing the future of rare disease research.
nihr RD

Got a question?

Latest News and Research

Using genomic sequencing techniques is a new way of looking at r(20) that hasn't been done before...