Rare Disease Report Launched!


Rare Disease Report Launched!

Date: 15 Oct, 2015  No Comments

On the 28th February (Rare Disease Day!) the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions published a report calling on the Department of Health to implement the Strategy for Rare Diseases and improve services for people affected by rare conditions.

ASUK were actively involved in this inquiry, Kerry Leeson-Beevers was involved to ensure patients and families voices were heard at every stage, through the Patient Empowerment Group which was initiated by Rare Disease UK (picture below kindly provided by Rare Disease UK, Kerry Leeson-Beevers from ASUK is picture second from right).

You can find out more about this report and the 51 commitments from the Rare Disease Strategy by following the link to the Rare Disease UK website:

https://www.raredisease.org.uk/news-events/news/appg-launches-report-on-the-implementation-of-the-uk-strategy-for-rare-diseases-in-england/

Follow the link below to read the full report – you may recognise someone on the front cover!

https://www.raredisease.org.uk/media/2757/final-for-website.pdf