Recent Announcements

An archive of our recent Announcements

Recent Announcements Archive

28th of February is Rare Disease Day!

Today is a #rarediseaseday, I have to admit that since inception of our South West rare disease policy research group we have outgrown South West and are working on national and European level with amazing partners. Some of our progress (click on title to see full...

Whole genome sequencing for newborn screening

Public dialogue on whole genome sequencing for newborn screening. Results from dialogue can be found here (click on announcement to get the link) 8 July 2021. Source: Genomics England

Are you Interested in Participating?

We are thrilled to report that we are in the late planning stages for the first round table of Rare Disease Polices in the South West (later in 2021). If you are interested in participating or would like to share a story of living or caring for someone with rare...

Our New Portal is now Live!

We are proud to announce that with the help of the fantastic team at The Web Design and SEO Company our portal is live and operational. Thank you Research England QR Strategic Priorities Fund and Plymouth Institute of Health and Care Research for making this possible....