The CdLS Foundation UK & Ireland is a family support organisation which exists to ensure early and accurate diagnosis of CdLS throughout the world, promoting research, and enabling individuals, families, friends and professionals make informed decisions and plan for the affected person’s present and future.

The Foundation provides support through holding conferences twice a year where families get to meet each other, get the chance to talk informally about the condition and learn from the experiences of others. 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.

The Foundation has a helpline which is manned the Office Administrator. They 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. This information comes from the Foundations own Scientific Clinical Advisory Team (SCAT). This team is comprised of top professionals from the UK with an extensive knowledge of CdLS.

Families receive “Reaching Out” magazine, which is published twice a year and covers news stories about research developments, news from our families and articles on issues affecting people with CdLS.