Reply To: Rare Diseases and Unusual Conditions

You are here: Connect! Forums SIG Forums Rare Diseases and Unusual Conditions Reply To: Rare Diseases and Unusual Conditions

#369551
Patti DeMuri
Participant

I’m a retired medical mom of adult kids with EDS, mast cells, eosinophilic esophagitis, POTS, and multiple other rare diseases. My approach is as a patient educator and coach to help rare disease patients and caregivers self-advocate for the care they need thru courses, a membership, and coaching sessions. The google group idea sounds great – I’ll send an email.

avataravataravataravatar
APHA - The Alliance of Professional Health Advocates
Scroll to Top