Guidance for a Family with a Newly Diagnosed Cousin

Our Patients Rising’s Patient Helpline navigator program is an online, phone and email support service for patients and caregivers. Our professional patient navigators provide direct support to people and connect them to local, state and national resources, programs, and services.

Client situation: A family member called about their cousin who was recently diagnosed with dysautonomia. With a new diagnosis, they weren’t sure where to turn, or how to find an appropriate physician in the area. They reached out to us and asked for help.

Helpline Response: With inquiries like this, the first thing we ask is where the client is located so we can find resources local to them. The patient was from Texas. Knowing the diagnosis of dysautonomia, we looked for patient support organizations and found Dysautonomia International, a non-profit that has a ton of information for both newly diagnosed patients and those who have been dealing with the diagnosis for years.

Along with sharing the non-profit information, we were able to find a few doctors and treatment centers who treat dysautonomia in the client’s area. We sent the family member this information to convey to their patient-relative.



You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.