When a rare disease strikes, we might be to 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 aggregate, rare disease has a sobering impact on the lived experiences of so many patients but also their families and care givers. There is a chorus of story tellers in rare disease who need to be heard, elevated and advocated for.

In this episode of the Story Conversations podcast we talk with Pam Cusick, SVP of Strategy, Client Solutions and Patient Advocacy at Rare Patient Voice. RPV connects patients and family caregivers globally with all types of engagement opportunities, in market research, health economics outcomes and real-world evidence, user experience/human factors studies, and clinical trials. 

Pam shares poignant 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. Our conversation with Pam reveals how providing opportunities for patient and care giver 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 (not just dying from) rare conditions. 

Details on the work of Rare Patient Voice can be found here:  http://www.rarepatientvoice.com

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