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 […]