written by Mina Frannea, Today’s Mama Each year on Rare Disease Day, participants from around the world advocate for those who are affected by rare diseases, bringing attention to the need for improved access to treatment and for higher standards in diagnosis and care of patients. The observance of Rare Disease Day falls on the last day of…
Vanderburg Elementary’s Second Annual WRDDay Event
On February 24, 2012, Vanderburg Elementary School celebrated World Rare Disease Day by participating in Jeans for Genes day. The kids and staff were encouraged to forgo school uniforms and wear jeans that day as well as their “Be Kind” shirts (Josh Stevens Foundation), and it was amazing to see such a beautiful sea of denim…
Vanderburg Elementary participates in second World Rare Disease Day Event
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…
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…