Wish list?

[DC_motheranddaughter]

Cambridge doctors (multi speciality) are meeting tomorrow to discuss getting better/more linked up services for DC- hopefully also a National Specialist Centre, which will be able to support local specialists- what's on your wish list? Let me know, even if you don't live in this area and I'll pass it on

[SunraysandSaturdays]

That's great news. I was at a rare diseases meeting this week and other folk there were surprised we don't have a specialist centre already. Just shows how much there is to do! Would be great to see a group of multidisciplinary specialists at least annually for an MOT and have them on hand to provide advice to local doctors. Visiting the centre to monitor across all systems in the hope of early intervention, rather than just fire fighting would be great too. We'd also love some information sheets on DC that we could hand to folk, rather than repeating ourselves all the time and trying to hold all that info in our heads!

[SunraysandSaturdays in reply to SunraysandSaturdays]

And getting the specialists to help prioritise and support possible research projects too.