Rare in Common, a new monthly podcast which features stories about patients with rare diseases, made its debut on Rare Disease Day, February 28th. The podcast’s goal is to raise awareness and give a voice to those affected by rare diseases.
Rare in Common actually began with a film. Cambridge Biomarketing, the creators and producers of the ‘Rare in Common’ podcast, are also responsible for the 2016 documentary film, of the same name. The film was nominated for an Emmy Award in 2017 and provides a platform for those affected by rare disease to tell their story. The stories are moving and eye-opening at the same time. The podcast is a natural extension of the film.
Fewer patients means less attention.
It’s important that those that are affected by rare diseases have a platform to share their voice and draw attention to their cause. In the U.S., there are around 7,000 rare diseases or disorders. These numbers indicate that there many, many disorders and diseases vying for limited research funds. There is a lot of “noise” in the arena of rare diseases and the sheer volume of diseases and disorders makes it harder to differentiate or draw attention to any single group or disease.
The first three episodes of the Rare in Common podcast are all updates on stories from the film. Future podcasts will introduce the audience to a new group of patients and their families. Focusing on the common factors of struggling with a rare disease and chronicling the stories of these patients and their families will help guide the larger population of folks who suffer from rare disease.
“The concept behind ‘Rare in Common’ is the commonality of people with rare disease: no matter what the disease, rare patients and their families share similar struggles,
perseverance, and journeys.”
— Maureen Franco, CEO, Cambridge BioMarketing
A rare disease is defined as one who affects fewer than 200,000 patients (although many diseases are far rarer than that). A single group advocating for one disease state in a nation of 325 million people may not have the resources to to draw needed attention. However, the arguably more important statistic about rare diseases and their effect on the country, is that one in 10 people are battling a rare disease in the United States and that is around 25-30 million Americans– and that’s a very large number, indeed. When people from across the patient community work together, can form support networks and cause real change.
The Rare in Common podcast’s producers hope to bring together patient advocates, health care providers, insurance providers and other groups of interested parties and provide a forum for encouraging patients to tell their story.
You can read more about this podcast in the original article here.
