What we do...

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 so everybody gets a chance to go.

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.