Hi Nancy,
Before joining Deb as the Co-director of APHA, I specialized in rare disease advocacy mostly for the pediatric population. I am also a caregiver (my son was diagnosed with Gaucher disease at birth). It sounds like there are quite a few here who also specialize in rare disease advocacy. There is an upcoming conference – RARE Patient Advocacy Summit in San Diego (and virtually) being held in September: https://globalgenes.org/event/rare-patient-advocacy-summit/
If you are looking to connect with peers and patients, Facebook has been a great resource for connecting with others, and NORD has been a terrific resource for patient assistance organizations that help to pay for care.
Please reach out with questions or if I can be of help.
Dena
