Rare in Common is a podcast about the unique stories of people affected by rare disease. Host Andra Stratton, a rare disease advocate, speaks with different members of the rare disease community, including patients, caregivers, healthcare professionals, and researchers. Join us as we tackle topics such as FDA approvals, national awareness campaigns, finding hope and support within the rare community, and the extraordinary challenges of living with a rare disease. Click. Listen. Feel.
Episode 28 – #RareDiseaseTruth: how a hashtag is changing the conversation this Rare Disease Day
Approaching Rare Disease Day 2021, Neena Nizar, EdD, felt frustrated with the usual conversation around living with rare. Instead, she decided to start a different dialogue, sharing the hard truths of her condition.
What followed was an outpouring of global support, with individuals from many rare disease communities coming together to share their stories with the hashtag #RareDiseaseTruth. In less than 2 weeks, the hashtag reached nearly 2 million people, generating 7000 interactions and 5000 shares.
In addition to celebrating their strength this Rare Disease Day, the hashtag has given patients, caregivers, and leaders the chance to be vulnerable—and discover common truths that tie them together.
Episode 27 – “It’s working time”: building Sophie’s Neighborhood
In March 2020, after a year of battling what was assumed to be arthritis, 3-year-old Sophie Rosenberg was diagnosed with multicentric carpotarsal osteolysis (MCTO), a rare skeletal dysplasia. In spite of their initial shock, her parents Lauren and Hosea immediately tapped into their entrepreneurial roots, creating Sophie’s Neighborhood, an advocacy organization dedicated to funding research for MCTO treatments. They now find themselves in the unfamiliar world of rare disease advocacy, fighting to change their daughter’s future.
And they need your help. Sophie’s Neighborhood is holding their next fundraiser on August 15, 2020.
Episode 26 – From diagnosis to network director—living with XLH
Diagnosed with X-linked hypophosphatemia (XLH), Susan has faced the challenges of living with this rare disease to become an advocate of the community and an influential force behind the XLH Network. The global community recently celebrated the second annual XLH Awareness Day on June 23, 2020.
This episode is brought to you by Ultragenyx.
Episode 25 – What does COVID-19 mean for the rare disease community?
As a global community, we’re living through unprecedented times. But what does COVID-19 mean for people living with rare diseases? Neena Nizar and Seth Rotberg are rare disease advocates, both living with rare diseases themselves, and are here to provide some insight. In this episode, they discuss the impact of the pandemic, both in their present-day lives and for the future of the entire rare community.
Episode 24 – The promise of genetic testing in rare
Patients diagnosed with rare diseases likely have a lot of questions. Luckily, Joe Alaimo, our guest on this episode of the American College of Medical Genetics and Genomics (ACMG) series, can help answer them. Hear from Alaimo as he talks about the importance of genetic research in the rare disease space and advocates for patient education to promote disease understanding.
Episode 23 – Breaking through with interactive education in rare disease
When it comes to understanding rare disease, education is the first step. In this installment of the American College of Medical Genetics and Genomics (ACMG) series, our guest is Debra Regier, the director of genetics education at Children’s National Medical Center in Washington, DC. Listen as she discusses her methods in making education more effective, as well as the importance of interactive learning in rare disease.
Customer ReviewsSee All
Undiagnosed until GOOGLE
It's amazing to me how helpful the internet can be at times... even with it's time-consuming searching capabilities, with the rare disease community it has been a life-giving source of comfort and healing!
Justin's wife decided to search for relief in his situation and stumbled into his diagnosis of FCS. Too many of us are un-diagnosed and suffer way too much harm during the unknown and exploratory years.
Thanks for sharing parts of your journey.
Wonderful host brought up great questions.
Courageous stories in rare disease community
This is a great series that focuses on the rare disease community but appeals to anyone who likes personal stories of overcoming adversity.
I'm looking forward to the rest of the series!