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.

All relationships face stress, but partners caring for a child with a serious illness are confronted with unique challenges. Each person in the relationship may cope differently. You may feel closer to, or more distance from, your partner over time. Communication with one another about how each responds to stress and grief, and what kind of support each person needs, can help increase understanding. Dr. Talia Zaider, a licensed psychologist and marriage and family therapist, will offer insights and considerations…

Grief whether anticipatory or in bereavement is a shared experience for the family and yet each member will likely experience and process grief in different ways, over different periods of time and with varied physical and emotional manifestations. Parents often wonder or worry will I have the capacity to support my other children in their grief as I navigate my own? Or will my marriage or partner relationship change or suffer if we grieve in different ways? Others may struggle…

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…

Anyone, from infancy through adulthood can experience medical trauma. Caregivers can too. Understanding what medical trauma is and knowing the signs can help you get support for your child and family. Dr. Meghan Marsac, pediatric psychologist and pediatric medical trauma expert, and Melissa Hogan, mother of a child with a rare disease, wrote the book “Afraid of the Doctor” to help families who experience stressful and potentially traumatic medical events. Join us in conversation with them to learn more about…

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 and local leaders; hang awareness flyers in public places; make presentations to civic groups or health workers; write to their local newspapers; and much more. For more information contact Gabrielle Nadeau