Save the date for our monthly virtual Meet Up which is of a more casual style focused on connection, collaboration and support. Bring your questions or life experience to the […]

This is it! The final Bulls and Barrels Event of the seriesPrize Buckles will be awarded, and Hollywood Harris will be there to entertain the crowd– you don’t want to […]

Losing a loved one with CdLS at any age can be life-altering. Parents, siblings, relatives, and friends feel a tremendous loss and often have difficulty understanding why. It is so […]

Anticipating the birth of a child can be one of the happiest times for parents. But when babies have life-threatening medical issues and begin their lives in the NICU, everything […]

For the entire month of March, when you purchase a $2.50 reusable Community Bag at the Stop & Shop located at 498 Bushy Hill Road, Simsbury, CT, $1 is donated […]

Please join us to explore how completing healthcare advance directives for/with your child can support your family’s goals and wishes. We will discuss the importance of discussing and documenting healthcare […]

This Foundation-managed, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore, MD. Foundation Medical Director Antonie Kline, M.D., Director of Clinical Genetics at the Harvey Institute […]

Join us for a new, fun event to raise awareness and funds for our CdLS community. The Eckerd College Science Outreach Club has recently established a Students for Rare chapter affiliated with […]

Join a panel of siblings to gain insights into the fears and worries that siblings carry, the things that helped them (and those that didn’t), and how loving a brother […]