A comprehensive strategy aimed at providing hope and treatment to present and future Canadians with rare diseases will be unveiled at a news conference on Parliament Hill May 25.
The strategy involved input from health professionals, patients, governments, policy makers and health professionals.
Among the participants in the conference are DurhaneWong-Rieger, President of the Canadian Organization for Rare Disorders (CORD), Maureen Smith, CORD Secretary, also living with congenital Panhypopituitarism, Kate White, a 24-year-old woman who has Gaucher disease, as does her sister and Dr. Alex MacKenzie, Co-leader of the Care4Rare project at the Children’s Hospital of Eastern Ontario.
The conference will be held on May 25th beginning at 10am.
