ALBANY - World Rare Disease Day is Friday.
Albany got a jump on it on Wednesday with its second annual Rare Disease Day forum.
Doctors from the Children's Hospital at Albany Medical Center took the opportunity to discuss management of pediatric rare and complex diseases. In this country, a disease is considered rare when it affects less than 200 thousand people. There some 7,000 known, rare diseases in the world affecting an estimated 300- million people.
For kids diagnosed with a rare disease it can mean many doctors, lots of juggling of schedules and treatment and a sense of being alone.
“Many families can feel very alone that they have this child who is the only child in this area with this diagnosis. But by bringing this together we can as a group help the families and help our practitioners to take better care of these children,” says Dr. Patricia Hopkins of Albany Medical Center.