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 […]
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.
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 disjointed. Information can be hard to get, hard to understand, and even harder to keep organized and easy to find just when you need it […]
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 Shriners Children's Salt Lake City have a long-standing partnership. We are truly grateful to work together. The clinic is a wonderful opportunity to meet with […]
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 […]
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 […]
Join families from California for a CdLS Foundation Sponsored Family Gathering. Graciously hosted by Traci Weber and Kimberly Ingold Saturday, March 25, 2023 11–3 PM PST Harvard Community Center 14701 Harvard Ave Irvine, CA 92606 For more information, contact: familyserviceteam@cdlsusa.org Register Today
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 […]
So much of our ability to access medical and behavioral health care in the U.S. depends on a family's health insurance. Whether your health coverage is offered by your employer, purchased on a health exchange, or includes Medicaid or Medicare, understanding health insurance is a challenge for just about everyone. Making sure you make the […]
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 […]
