The CdLS Foundation UK & Ireland is part of the World Federation of CdLS Support Groups. The Federation works with a Scientific Advisory Council (SAC) which includes medical professionals from around the world. The SAC also has a network of associate members of different disciplines in different countries who provide support and advice for people with CdLS wherever they may be.
It is a guiding principle of the Federation and its SAC that information should be shared. Doctors regularly travel to different parts of the world to share their experiences and talk to carers of affected CdLS people.
The Federation runs a global conference every two years – 2015 was in Portugal, 2017 will be in Brazil.
The UK & Ireland Foundation also has its own Scientific Clinical Advisory Team (SCAT). This team is comprised of top professionals from the UK with an extensive knowledge of CdLS.
The CdLS UK and Ireland group also holds mini conferences/family meetings twice a year where families get to meet each other and get the chance to talk informally about the condition and learn from the experiences of others. For carers and professionals, there are presentations that focus on specific elements of the condition. It is also a chance for families to meet with professionals that know CdLS. These events move around the regions and in recent years meetings have taken place in Derby, Gloucester, Belfast, Newcastle, Liverpool and Solihull. We go to Guildford in spring 2016.
The Foundation has a helpline which is manned by our general manager. We also produce booklets and other information packs about the condition which are sent to carers and professionals to spread awareness and provide basic information about CdLS.
There is also our magazine "Reaching Out UK & Ireland", published 2-3 times a year, which covers news stories about research developments, news from our families and articles on issues affecting people with CdLS.
There is no charge for people with a CdLS family member but donations of £15 a year are welcomed as a fair contribution towards the running costs of the group.