Two of our trustees, Andrea Reid – Kelly and Ian Legg are in Cardiff this week attending the BSPED conference . This is the British Society of Paediatric Endocrinology and Diabetes – Andrea and Ian are there to raise the … Continued
Every young person – whatever their circumstances – relies on world class career guidance to be able to make the right choices for their future. This publication from the Gatsby Education and the Careers and Enterprise Company & Disability Rights … Continued
It’s less than 6 months until the next Families Activities Weekend on 12th to 14th April 2019 with the Families Day itself on Saturday 13th April. Although the full programme for the Families Day won’t be published for a few … Continued
Sorry for the delay but you can now find the recordings of most of the sessions from the 2018 Families Day here We’re gradually transcribing the recordings and these will be added over the next few weeks.
Each year a key international conference takes place where leading figures from the medical world meet to look at the latest developments in research and treatment on the disorders along the Ras/MAPK Pathway. Amongst those taking part were Professor Bronwen … Continued
And the latest in our recordings of sessions from the 2018 Families Day concerns the invaluable work which is being undertaken by Professor Patton and his son Dr Alistair Patton. Noonans 2018 – Session 8 – The 30 Year Study … Continued
Yes, you can now listen to both sessions of questions from families and answers from our panel of medical experts as it happened – here’s part 1: Noonans 2018 – Session 6 – Q and A 1 and the session … Continued
The next recordings are of Dr Emma Burkitt Wright’s presentation on Pregnancy & Noonan Syndrome (starting with Ian Legg thanking Andrea and Brian for their presentations – have you listened to them yet?), followed by Dr Juan Kaski talking about … Continued
We are putting recordings of some of the sessions and presentations from the 2018 Families for Families Day here, and the first up are Two Family Stories – Andrea Reid-Kelly and Brian Carlton, both of whom have Noonan Syndrome, tell their own … Continued
Following on from the success of this year’s Families Day and Activities Weekend, we are happy to be able to confirm that next year’s event will be held over the weekend of 12th to the 14th April with the Families … Continued
