Patient Advocacy Organizations: One Story of Success
摘要
Patient advocacy organizations play a vital role for individuals and families living with rare disorders. They have the unique ability to connect patients to support services, other affected families, providers, treatment options, and research opportunities, while also serving as a hub for accurate and dependable information related to the disorders. Above all, these organizations and their leaders must always have the highest level of ethical integrity to provide the best services for the communities they serve.