#curecdkl5 old article but lovely to know we’ve achieved our goal of being one of only two Rare Disease Collaborative networks which were selected by NHS England under their new initiative, the RCDN is run out of #bristolchildrenshospital
Rare Disease is awash with parent advocates whose love and determination knows no bounds. Carol-Anne Partridge of the charity CDKL5 UK gives a passionate account of the highs and lows of their mission for a centre for excellence for CDKL5.... https://t.co/62P7ArQunm
I posted a new video to Facebook https://t.co/qRePavqJRg
Friend of Rare Disease Day 2019 - 28 Feb - CDKL5 Canada https://t.co/7Y5N3AvVzF
We are THRILLED to announce that registration for the 2019 6th Annual Million Dollar Bike Ride is now OPEN!!! Please follow the link below to register for the ride, which takes place on Sat., June 8, 2019: https://t.co/YuNHMjJ9mc. We look forward to seeing you in June!!!