I’ve signed up for Cancer Genomics xB
Great hear you joined up for that Beryl. Will be good to get your feedback.
(pity the 100,000 gene project is England only ! (although there is talk of similar projects, to come elsewhere)
yes 7000 - 8000 rare diseases ! although together they are common. plus so many symptoms "overlap"
As I am on the board for the Patient Empowerment group (GAUK ? RDUK) we come across most of them on a regular basis.
this group feeds into the RD strategy oversight board, so we need to be fairly informed.
due to see Marios H. next week, although it looks like a flying visit as public health Wales and local Health board issues call my attendace....
It’s so easy to forget that there are more rare diseases, Ataxia can be all consuming. As you say, many symptoms can ‘overlap’ and make diagnosis lengthy and frustrating.
I think I’d rather have your schedule on Thursday, I have a date with my dentist, for potential major works.
I hope it’s straightforward with Marios, enjoy the rest of the day:-) xB
Pob Lwc / Good Luck with the dentist
maybe of interest to you
Call for members of new Participant Panel