The latest BUMPER issue of our newsletter, with highlights from our r(20) Gala Ball and family picnic, update on Research and of course our Research Fund Campaign and much, much more...
Read Dawn Gray's blog post about her recent day out representing r(20) together with Jackie Aley (this was Jackie's first event attendance for us, and hopefully wont be her last??)
Read Dawn's blog
Now available to order...
Order your r(20) Families Conference DVD today and get a FREE copy to hand to your paediatrician/neurologist with every order (1 per family)!
More details her
We've added a new personal story - checkout Daan's personal story of how having r(20) syndrome led to a new invention here.
The latest issue of our newsletter, with highlights from our r(20) families conference, update on our Research Fund Campaign and more...
Newsletter #6 Dec 2017
Here's what Dawn had to say about the event:
"I was pleased to attend the conference with Allison in October 2017. It was very interesting. There were several people who did talks on their rare disea
Check out our highlights video from our Families Conference here
Check out our latest blog post from Claire and Chris Sullivan on their recent fundraiser and find out what other events they have planned to raise funds for our research fund campaign.
Read about J
We've added a new personal story - checkout Rachel Taylor's personal story of living with r(20) syndrome here.
The Sandcastle Trust - Visit Santa scheme
Under this scheme The Sandcastle Trust will send families from across the UK who are affected by rare genetic condition on a family day out to visit Santa