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.