Purple Canaries

Joyce Gould with Jill Gould

National Porpyria Awareness Week (NPAW)

Saturday, National Porphyria Awareness Week, 2019

 APRIL 6 – 13, 2019 NATIONAL PORPHYRIA AWARENESS WEEK Finally! An organization that understands… The New York State Rare Disease Alliance: A Place for Patients and Caregivers Who are the True Experts in Rare and Complex Disease Care This is why Closed Facebook Forums dedicated to Porphyria were established long ago and have continued to flourish […]