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Episode | Date |
---|---|
Episode 29 – “It’s not going to control my life:” Adapting to life with LEMS
|
Apr 28, 2022 |
Episode 28 – #RareDiseaseTruth: how a hashtag is changing the conversation this Rare Disease Day
|
Feb 25, 2021 |
Episode 27 – “It’s working time”: building Sophie’s Neighborhood
|
Jul 30, 2020 |
Episode 26 – From diagnosis to network director—living with XLH
|
Jun 25, 2020 |
Episode 25 – What does COVID-19 mean for the rare disease community?
|
Apr 09, 2020 |
Episode 24 – The promise of genetic testing in rare
|
Mar 26, 2020 |
Episode 23 – Breaking through with interactive education in rare disease
|
Feb 27, 2020 |
Episode 22 – Misdiagnosed: The importance of genetic testing
|
Jan 30, 2020 |
Episode 21 – From broad questions to exact answers
|
Dec 19, 2019 |
Episode 20 – Taking back life by tackling diagnosis
|
Nov 21, 2019 |
Episode 19 — Exploring transgenics—the forefront of genetic advancement in rare
|
Jul 18, 2019 |
Episode 18 — Connecting the dots in the network of rare
|
Jun 20, 2019 |
Episode 17 — The hope that comes with a name: the power of a diagnosis
|
May 23, 2019 |
Episode 16 — Voices of ACMG: On the floor at the 2019 annual meeting
|
May 09, 2019 |
Episode 15 — The A, T, G, and C’s of genes: exploring genetics with Dr. Anthony Gregg
|
Apr 25, 2019 |
Episode 14 — “Beautifully heartbreaking”: one mom’s rare and incredible journey
|
Mar 28, 2019 |
Episode 13 — Rare Disease Day: Looking back. Forging ahead
|
Feb 28, 2019 |
Episode 12 — When all the stars align in the fight against ALL
|
Jan 24, 2019 |
Episode 11 — “I got here because I asked for help”: coming together in rare
|
Dec 20, 2018 |
Episode 10 — When a rare disease treatment fails approval, what happens next?
|
Nov 29, 2018 |
Episode 9 — From physician to CEO; always a passion for rare
|
Nov 15, 2018 |
Episode 8 — On location: Global Genes RARE Patient Advocacy Summit
|
Nov 01, 2018 |
Episode 7 — Blood brothers and sisters: the bond of hemophilia A
|
Oct 04, 2018 |
Episode 6 — Two rare: fighting Marfan and Ehlers-Danlos
|
Aug 30, 2018 |
Episode 5 — The power of siblinghood in rare
|
Jul 20, 2018 |
Episode 4 — Taking on rare as a family
|
Jun 28, 2018 |
Episode 3 – Ehlers-Danlos and rare art
|
Feb 28, 2018 |
Episode 2 – On trial
|
Feb 28, 2018 |
Episode 1 – Hanging out with zebras
|
Feb 28, 2018 |