When a rare disease strikes, we might think only of the small populations of patients who are impacted by any single rare condition as stories too specific to be told. Taken in total, rare disease has a sobering impact on the lived experiences of millions of patients, as well as their families and caregivers. There is a chorus of story tellers in rare disease who need to be heard, elevated and advocated for.
Pam Cusick, Senior Vice President of Rare Patient Voice, joined the latest episode of the Story Conversations podcast, sharing stories about passionate care givers who turn the tragedies of rare disease that impact their families into life defining initiatives to make a difference in the broader world. These stories reflect the community of patients, families, and the thousands of advocacy and support groups RPV helps through their referral programs. The conversation with Pam reveals how providing opportunities for patient and caregiver stories to be heard drives action to tackle the economics and therapeutic implications of rare disease and provides a window into the realities of living with rare conditions.
