Events

What do we hear that scares families the most. We will be tracking the toughest questions from all classes, as well surveys done during the year. Come prepared with your […]

Everyone is welcome! Come and enjoy an afternoon of connecting, learning and fun for the whole family! Enjoy pony rides by Pony Town Parties, pumpkin decorating, and outdoor games. Fragile […]

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 […]

Congratulations! We have worked all year to take the next steps. But it is easy to get caught in THE GAP. Sometimes when we are working toward a big goal, […]

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 […]

Join our guest speakers who will share with us the critical information you need to know about special needs trusts. Who should you consider as trustees, what are the important […]

Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers […]

There are often challenges when you have a family member with a rare diagnosis like CdLS. All the puzzle pieces that make up your loved one's care can seem so […]

We are excited to share that there will be a Multi-Specialty Clinic for children with CdLS on March 8, 2023, at Shriners Children’s Salt Lake City. The CdLS Foundation and […]