Openly Rare with Paul Kidwell
Of the more than 7,000 rare diseases,
only aproximately 350 have FDA approved treaments.
“Openly Rare with Paul Kidwell” is a podcast which will feature honest and transparent discussions around the many issues that affect and challenge the rare disease experience. There are countless stories connected to rare diseases and they are as diverse as the storytellers who share this phenomenon. Patients, caregivers, advocates, healthcare professionals, policymakers, regulatory officials and medical researchers can all be impacted by a rare disease, but their familiarity with these illnesses is seen through their own unique lens and the stories they tell is as individual as their experience.
Individuals with rare diseases and those that support them show great courage and perseverance in the face of significant discouragement. Most rare diseases have no cure, and in many cases no identifiable treatment which often translates into a lifelong experience of living with a rare disease for patients and families. Every day lived with a rare disease means facing and rarely surmounting incredible physical, emotional and, often, financial challenges.
Patients who have a rare disease face difficulty in every step of medical care, including diagnosis, treatment, and preserving quality of life. Sometimes, patients go years without receiving the correct diagnosis for their condition. Once they finally have an answer, often no treatment is available for their condition. The numbers of patients of these illnesses may be small, but when you consider the number of people who may also become a part of their universe; well, the participants are anything but rare. And each person who is involved has a voice.
“Openly Rare with Paul Kidwell” will offer a chance for those who live with and share rare diseases an opportunity for their voices to be heard and to tell these incredible stories. 2018 storytellers will include:
- Bo Bigelow and Daniel DeFabio, co-creators of DISORDER: Rare Disease Film Festival
- Dr. Paul G. Richardson, Hematologist, Dana Farber Cancer Institute
- Joyce Kulhawik, Emmy Award-winning arts and entertainment critic and three-time cancer survivor
- Paul G. Richardson, M.D., Clinical Program Leader and Director of Clinical Research of the Jerome Lipper Multiple Myeloma Center, Dana Farber Cancer Institute