Canadian CdLS Awareness Foundation

Awareness: We raise awareness through active public social media accounts on Instagram and Facebook that raise awareness of Cornelia de Lange Syndrome its diagnosis management and treatment as well as new research and the work and new programs and services of the foundation. We raise awareness on LinkedIn with a specific reach to geneticists pediatricians and children’s hospitals to raise awareness on the accurate and timely diagnosis of CdLS. We have We have a CdLS Podcast on Apple Podcasts and other podcast venues that shares information stories research and new advances in CdLS. We raise awareness among CdLS Families through private Facebook groups (provincial and national) as well through our Wix website App where families can share freely and privately among other CdLS Families across Canada. Diagnosis: We have recruited a Canadian CdLS geneticist that is specially trained in CdLS who is supporting the diagnosis of all Canadians with a clinical diagnosis of CdLS to get a molecular diagnosis. We have created shared a 'Know Your Genes' brochure and distributed it widely across Canada through genetics clinics and families and their care providers to advance the accurate diagnosis of this rare syndrome. We provide referrals to our geneticist who functions in the role of a Clinical Advisor- Geneticist for all clinicians and families across Canada to provide support in accessing molecular testing and achieving an accurate diagnosis. Education: We provide regular education materials to families by sending every family and their clinical team (via email and by Canada Post) a comprehensive orientation to CdLS the medical management of CdLS and supportive educational materials to ensure families are able to care and advocate for their loved one with CdLS. We provide regular virtual education sessions on various topics relevant to CdLS we join regular school meetings to provide advocacy and education at school IEP meetings. We send our clinical a