Episode 29 – “It’s not going to control my life:” Adapting to life with LEMS
In December 2019, Tescha left her job of 16 years as a physician’s assistant in the emergency...
21:39
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...
34:24
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...
34:38
Episode 26 – From diagnosis to network director—living with XLH
Diagnosed with X-linked hypophosphatemia (XLH), Susan has faced the challenges of living with...
30:16
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...
35:12
Episode 24 – The promise of genetic testing in rare
Patients diagnosed with rare diseases likely have a lot of questions. Luckily, Joe Alaimo, our...
27:24
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...
24:23
Episode 22 – Misdiagnosed: The importance of genetic testing
A diagnosis is supposed to bring patients answers, but what happens if that diagnosis is wrong?...
26:23
Episode 22 – Misdiagnosed: The importance of genetic testing
A diagnosis is supposed to bring patients answers, but what happens if that diagnosis is wrong?...
26:23
Episode 21 – From broad questions to exact answers
With gene therapies on the horizon, a diagnosis is more important than ever. In this installment...
19:50
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....
18:04
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....
18:04
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...
19:11
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...
34:00
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...
25:25
Episode 16 — Voices of ACMG: On the floor at the 2019 annual meeting
In this special episode, join the Rare in Common team on the floor at the American College of...
24:38
Episode 15 — The A, T, G, and C’s of genes: exploring genetics with Dr. Anthony Gregg
This episode is the first in a special series recorded live at the 2019 American College of...
28:23
Episode 14 — “Beautifully heartbreaking”: one mom’s rare and incredible journey
From navigating her son Case’s rare diagnosis with the help of her own mother (and a medical...
27:02
Episode 13 — Rare Disease Day: Looking back. Forging ahead
Rare Disease Day marks 1 year of creating Rare in Common podcasts! In honor of this special day,...
18:50
Episode 12 — When all the stars align in the fight against ALL
When Eve Pallang felt a pain in her ribcage, she first brushed it off as muscle soreness from...
38:37
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