Parenting is a lifelong process, and it is particularly so for parents of children diagnosed with a serious illness, where the child’s chronological age may not correspond with their developmental age. New challenges emerge as a child grows older and bigger. Pediatric providers or facilities may raise concerns about the ability to continue caring for […]

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. This […]

As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models whereby they take ownership of their care. This change can seem daunting for patients and parents, especially when dealing with rare disorders that involve multiple specialists that may be part of a care team. Join us […]

Guardianship is a legal process and used when a person can no longer make or communicate safe or sound decisions about his/her person and/or property. Before establishing a guardianship, you might consider other alternatives which we will discussed. What are the alternatives to guardianship? What individual rights are affected by a guardianship? What are the […]