Please help bring awareness to rare diseases by signing this petition and asking your friends and family to do the same. Together we can make a difference in the lives of children and adults living with rare diseases and ensure that they are not denied the medication they need.
WE PETITION THE OBAMA ADMINISTRATION TO:
ensure that off-label uses of FDA approved medicines are covered by insurance companies for Rare Disease patients
Health insurance companies are denying life-saving medicine to patients who suffer from Rare Diseases. A disease is considered rare in the USA if there are fewer than 200,000 patients diagnosed. The small numbers make it difficult to research medicines and cures. However, there are medicines already approved by the FDA (for other more common illnesses) that are prescribed for Rare Disease patients. Because the FDA hasn't approved these medicines for use with a rare disease, it is considered an "off-label" use and insurance companies are using this as a means to deny patients medical coverage. Please help Rare Disease patients get the medicine they need.