On February 24th, 2012, the students of Vanderburg Elementary School are participating in the school’s 2nd annual Rare Disease Day event. More than 800 students are to spend the last hour of the school day creating denim “gene” ribbons personalized with messages of hope. The projects will be sent to hundreds of American families with…
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Helping Kids with a Terminally Ill Sibling
Parents who are caring for a terminally ill child are often overwhelmed with emotion, yet if they have other children at home, they must somehow find the time and energy to help the entire family to cope. Children often share special bonds with their siblings and the loss of one child is sure to impact…
Pediatric Hospice
Why would a child need hospice and palliative care? Hospice is not a “place”, rather it is a philosophy of care that addresses the medical, psychosocial, emotional, and spiritual needs of the child and their family. We believe that this care should be available at the time of diagnosis, continue throughout the course of treatment…
World Rare Disease Day
World Rare Disease Day is a time when the global community comes together in unity, to build voice, awareness and support for the hundreds of millions of patients and their families affected by rare disease. There are currently just over 7,000 rare diseases identified, affecting 30 million people in the US alone. Although these numbers are staggering, what is of…