22 episodes

Rare in Common is a podcast about the unique stories of people affected by rare disease. In season 1, 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.

Rare in Common: the podcast Cambridge BioMarketing

    • Science

Rare in Common is a podcast about the unique stories of people affected by rare disease. In season 1, 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 22 – Misdiagnosed: The importance of genetic testing

    Episode 22 – Misdiagnosed: The importance of genetic testing

    A diagnosis is supposed to bring patients answers, but what happens if that diagnosis is wrong? Meet Susie Perkowitz, a patient living with a rare form of diabetes who faces blindness due to 3 years of misdiagnoses and incorrect treatment. Listen as she and Toni Pollin, a geneticist focusing on monogenic diabetes research, explain the importance of a correct diagnosis and how advocacy, working together, and genetic testing are paramount to finding answers for patients.

    • 26 min
    Episode 21 – From broad questions to exact answers

    Episode 21 – From broad questions to exact answers

    With gene therapies on the horizon, a diagnosis is more important than ever. In this installment of the American College of Medical Genetics and Genomics (ACMG) series, our guest Melanie O’Leary discusses the Rare Genomes Project and the goal to use whole genome sequencing technology to find answers for those with undiagnosed genetic diseases. Listen as she explains why broad is better in finding a diagnosis and the importance of partnerships with patients.

    • 19 min
    Episode 20 – Taking back life by tackling diagnosis

    Episode 20 – Taking back life by tackling diagnosis

    In the world of rare disease, it can feel impossible to find a diagnosis, let alone a treatment. Onno Faber explains how his interest in science helped him when was diagnosed with a rare disease called neurofibromatosis type 2 (NF2). Listen as he talks about the importance of patient involvement and his dreams for the future of rare disease.

    • 18 min
    Episode 19 — Exploring transgenics—the forefront of genetic advancement in rare

    Episode 19 — Exploring transgenics—the forefront of genetic advancement in rare

    Did you know that there are benefits to studying human genetic variants in worms or fish? In this fascinating chat recorded at the American College of Medical Genetics and Genomics (ACMG) annual meeting, Shula Jaron explains how transgenics give scientists a simpler way to study human disease genes and mutations in live organisms. You may be surprised to learn that worms and zebrafish play an important role in discoveries in rare.

    • 19 min
    Episode 18 — Connecting the dots in the network of rare

    Episode 18 — Connecting the dots in the network of rare

    In this episode recorded at the American College of Medical Genetics and Genomics (ACMG) Annual Clinical Genetics Meeting, hear from 2 experts in the field of genetics. First, Dr. George Diaz discusses his role as a medical geneticist and pediatrician, the value of connecting families affected by rare diseases, and the impact technological advancements have made in his field. Next, Dr. Katy Phelan shares highlights of her career as a laboratory geneticist—including her discovery of a rare deletion syndrome. She explains why when patients connect, it helps their families and improves her research and understanding of the disease.

    • 34 min
    Episode 17 — The hope that comes with a name: the power of a diagnosis

    Episode 17 — The hope that comes with a name: the power of a diagnosis

    For this third installment of the American College of Medical Genetics and Genomics (ACMG) Annual Clinical Genetics Meeting series, we sat down with Kim LeBlanc of the Undiagnosed Diseases Network (UDN). She walks us through how the UDN helps patients find answers, a diagnosis, and a community, as well as the hope a diagnosis can provide for those living with a rare disease. Listen as Kim explores the journey to diagnosis through UDN, resources and organizations for undiagnosed patients, and the role of genetic counselors in the rare space.

    • 25 min

Customer Reviews

tuneslistener ,

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.

Guy7575 ,

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!

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