Once you have achieved a diagnosis, it is important to find an experienced healthcare provider with training and expertise in the management and treatment of your disease. These providers have the most up-to-date knowledge and information about the most effective treatments as well as current research and clinical trials.
It sometimes can be challenging to find specialists for rare diseases, especially for people who do not live near major academic medical centers. However, resources are available to help in your search for providers.
Click below to view some resources related to connecting with your healthcare providers: