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 questions. We are going to tackle the tough ones!

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 Footprints, a local family support organization, will host fun activities and games for siblings during the event. To learn more about this event and how to RSVP contact Deirdre Summa.

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 for Human Genetics at GBMC, has led these clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Presentations on the following topics from CdLS Clinical Advisory Board members: Behavioral Psychology, Child Psychiatry, Gastroenterology, Genetics, Gynecology, Neurology, Pediatric Ophthalmology, Speech Pathology. Live Q&A with…

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, we only see all that is still in front of us. Let’s turn around and review the whole year and see how far you have come in your planning and let’s close THE GAP. You will then see the real progress you have made for your family’s future. Then you…

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 important that we as a community surround them with support and unconditional love. Although they have lost their child, grandchild, or sibling – they still belong and will forever be part of our journey. On February 12, we will be celebrating CdLS Remembrance Day. We ask that our fellow CdLS…

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 questions you should be asking, and why should you even consider setting up a trust for your family member. What kind of trust is right for your situation? How do you pick the right attorney? Register Here

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 about rare diseases and their impact on patients’ lives. For more information, contact Gabrielle Nadeau.