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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What happens in academic research when the subjects who are being researched are actually empowered to be active participants in the shape of the research process itself? Can the resulting story data yield insights with greater potential to stimulate discovery and change?

Our guest this episode is Judy Pryor-Ramirez, Clinical Associate Professor of Public Service and Faculty Director, Executive MPA Program at the Robert F. Wagner Graduate School of Public Service at New York University.

She shares with us her journey to developing academic research tools inspired by civil rights era theatrical techniques called “story circles”. These engagement methods were first established to spark dialogue around social injustice, voter disenfranchisement and segregation. She shares how this applying the “story circle” interview process can help academic social scientists reach deeper levels of understanding the dynamics of their research subjects’ lived experiences, especially in indigenous, Black and Latino communities.

In our conversation, Judy references a book to which she contributed, on the origin and extension of the “story circles” interview process method and case studies of its use in social science research. She provides our listeners with the following information about its availability.

Book title: Anti-colonial research praxis: Methods for knowledge justice

Edited by Caroline Lenette

Book website: https://manchesteruniversitypress.co.uk/9781526177001/

Discount code for 30% off on the publisher’s website: EVENT30

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Everywhere in the world non-profit organizations are challenged to pursue their mission, none more so than arts and cultural organizations like museums, ballet and opera companies, and theaters. Present circumstances with arts funding being cut exacerbates perennial struggles. Arts based non-profit organizations have always sought ways to grow their audiences efficiently, sell more tickets and build sustainable sources of funding. Now, this quest is mission critical.

Our guest this episode is Eric Nelson, Vice President, Global Partnerships at TRG Arts, an international change agency committed to building thriving arts and cultural organizations. Experts in the arts sector for over 25 years, TRG Arts has earned a reputation by successfully shaping for-profit and non-profit business models to focus on consumer relationships, financial stability, organizational frameworks, and people-centric teams.

In this episode, Eric talks about the need for non-profit arts and cultural organizations to be better storytellers as well as dispelling myths about growing, surviving and thriving in tumultuous times.

To learn more about TRG Arts: http://www.trgarts.com/

Hosted on Acast. See acast.com/privacy for more information.

Hosted on Acast. See acast.com/privacy for more information.