We will work through the vision of what you would hope to achieve for the future, the basic information you will need to gather now to be ready to take […]

How do we process an unexpected, life-altering event or circumstance? How do our choices and decisions have bearing on the outcome? Join CPN’s Blyth Taylor Lord and Facebook COO Sheryl […]

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 […]

St. Louis Children’s Hospital in St. Louis, Missouri will host their third Cornelia de Lange Syndrome clinic. The specialties in attendance will include the following: ENT, Genetics, Neurology, Orthopedics, Physical […]

The key to financial success is keeping good financial records. With insurance, government benefits, investments, and taxes, this can become quite overwhelming. We will work together to identify ways for […]

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 […]

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 […]

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 […]

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 […]

CdLS Awareness Day is observed each year in order to shed light on this often misdiagnosed, little-known genetic syndrome. Parents, volunteers and others request official Awareness Day proclamations from governors […]