Rare Storytellers

Storytelling and Music Make Us a Recognized Leader in Rare Disease Research, Education and Advocacy

“The world is not made of atoms, the world is made of stories.” – Muriel Ruykeser

To involve people at the deepest level, we need stories. Stories connect, heal, and empower us. Stories are said to be 22 times more memorable than facts, as they draw us into the vivid experience and heart of the storyteller helping us understand and experience, in a more intimate way, the journey they have been on. 

The Harmony 4 Hope Rare Storytellers Program drives our mission because it unites and raises the voices of 350 million people worldwide collectively impacted by 7,000 rare diseases. We currently have 24 Rare Storytellers on our team consisting of rare disease patients and parent advocates. They have shared their stories at over 40 events giving unique accounts of what life is like living with a rare disease. Their stories are beautiful, impactful, informative, and inspirational for anyone to hear – especially for physicians, nurses, healthcare professionals and medical researchers who care for rare disease patients and are committed to working for advancements in rare disease research.

Would you like to bring a Rare Storytellers event near you as a host or a sponsor? We are looking for rare disease advocates and opportunities to educate and inform the medical community, university health sciences programs, pharmaceutical companies and anyone who can help amplify our rare disease mission and purpose through the Rare Storytellers Program.

Become a Sponsor Today

The Three Pronged Mission of Harmony 4 Hope Merges Music and Storytelling to Advance Research in Rare Disease, Empower Patients and Families and Educate Future Healthcare Professionals on the Challenges Faced by those Living with Rare Diseases.

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