Losing a loved one with CdLS at any age can be life-altering. Parents, siblings, relatives and friends feel tremendous loss and many times have a difficult time 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 – […]
February 12th is CdLS Remembrance Day, we ask everyone, everywhere, to light a candle in remembrance of each and every one of our loved ones who are no longer with us. Sadly, more of individuals with CdLS have gained their wings in the past year, and we want to use this worldwide event to recognize […]
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 the next steps, and the details that are so important for your future plan. We will discuss information about retirement planning, the ABLE account, and […]
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 Sandberg for a candid discussion of how these experiences shape us, and how to move forward with maximum healing and minimal regret. This event is […]
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. There are so many different ways to get involved on Rare Disease Day!
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 Therapy, Occupational Therapy, Nutrition and Social Work. For more information contact Alisicia Jackson.
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 you to keep your records current, accurate, and complete.
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 […]
