RARING
Welcome to RARING, the voice of the rare disease community and a no-BS forum for patients and their families, rare disease patient organizations, and medical professionals. If you live with a rare disease or love someone who does, RARING is the podcast for you, by you, and with you every day. Tune in to hear leading experts discussing next-generation diagnostics and treatments. Learn from passionate nonprofit leaders talking about their highs and lows fighting for their communities. And laugh and cry as real patients and caregivers like you share authentic and inspirational stories about their challenges and struggles to busy living. RARING: Because together, our voices are louder.
- Update frequency
- every 13 days
- Average duration
- 31 minutes
- Episodes
- 39
- Years Active
- 2020 - 2022
Rare Voices of NORD: Jo-Ann D'Angelo
On the show today, Matthew Zachary welcomes Jo-Ann D'Angelo, a Parry-Romberg syndrome patient and the Founder of The Parry-Romberg Syndrome Foundation. PRS, as it is known in acronym land, is an extr…
00:25:57 |
Wed 26 May 2021
Jeff Goldstein and NORD's RareLaunch Research Ready
On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emotional support for transplant recipients and their…
00:29:40 |
Wed 12 May 2021
Adolescent and Young Adult Rare Disease: Seth Rotberg's Story
On the show today, we are talking all things adolescent and young adult (AYA) rare disease. Back when I was CEO at Stupid Cancer, we’d always say that AYA cancer was not better or worse, just differe…
00:31:07 |
Wed 28 Apr 2021
Rare Disease Research: What's All This Then?
On the show today: Vanessa Boulanger is Director of Research at NORD and heads up — you guessed it — NORD’s research department. What kind of research, you ask? Well, I’m glad you asked. We’ll be dis…
00:27:32 |
Wed 14 Apr 2021
Ungeeking The Speak: Dr Rachel Bailey Talks "Gene Therapy 101"
Dr. Rachel Bailey joins me today on the program. She is an Assistant Professor of the Center for Alzheimer's and Neurodegenerative Diseases and Pediatrics at UT Southwestern Medical Center. Today's e…
00:35:15 |
Wed 31 Mar 2021
A Conversation With Yann Le Cam: EURODIS Co-Founder and Chief Executive
On the show today — we’ve got a big one or you — Yann Le Cam, Co-Founder and Chief Executive Officer of EURODIS and Rare Diseases International — and “enraged rare disease advocate”, as the media hav…
00:33:26 |
Wed 17 Mar 2021
Season Two PREMIERE with CEO Peter Saltonstall
It is Season Two of NORDPod, and we're kicking it off in style with a "Last Year Tonight"-themed episode with NORD's President and CEO, Peter Saltonstall, from his undisclosed bunker in New England. …
00:30:11 |
Wed 03 Mar 2021
[BONUS] Opening Plenary: 2020 LRLS Patient and Family Forum
At NORDpod, we share our individual stories and experiences through bi-weekly conversations to celebrate (and sometimes commiserate) all the ways rare disease impacts our lives. This week’s episode i…
01:23:16 |
Wed 23 Dec 2020
Welcome to the NORD Rare Cancer Coalition
On the show today, we’re talking all things rare cancer and highlighting the incredible impact that NORD’s Rare Cancer Coalition has made since it was founded — by our two guests: John Hopper Preside…
00:32:28 |
Wed 16 Dec 2020
Prescription Drug Compliance, Adherence, and Robots, OH MY!
On the show today, Tom Rhoads, advocate, caregiver, and Founder and CEO at Spencer Health Solutions, whose mission is — if we may so paraphrase — make life easier for families and caregivers by simpl…
00:31:47 |
Wed 02 Dec 2020
Sarah Hill: A Young Life, Interrupted
Today’s show is all about one patient’s story navigating the world of rare disease, you know – the club you didn’t ask to join, but somehow, once you’re here, you’re kind of family? Sarah Hill had a …
00:25:24 |
Wed 18 Nov 2020
More Telehealth with Pamela Gavin, Chief Strategy Officer at NORD
On the show today: Pamela Gavin, Chief Strategy Officer at NORD. This episode is Part Three in — you guessed it — our three-part series on Telehealth… only this time around, it’s all about policy, ad…
00:24:19 |
Wed 04 Nov 2020
Crisis Management: How To Endure With Style
On the show today: Crisis Management OR how to pivot with as much style and grace as possible when all plans go out the window. Joining us is Debbie Drell, Director of Membership here at NORD and Mar…
00:30:12 |
Thu 22 Oct 2020
[BONUS] #NORDingOut | Meet the Founders of NORDpod
On this extra special BONUS EPISODE of NORDpod, it’s our very own Lesli Nordstrom, Director of Marketing and Communications! AND... In an epic role reversal, she dropped by OffScrip Media Studios in …
00:31:56 |
Wed 14 Oct 2020
Telehealth: From Bogeyman to Clinical Practice
On today's show, our time's enduring topic — No, not COVID, but it does make a distinct and necessary cameo on the show — No, we’re talking about Telehealth. Telemedicine. Tele–all the things. Perhap…
00:23:03 |
Wed 07 Oct 2020
Telehealth: A Lifesaver For One Rare Disease Family
On today's show, host Matthew Zachary welcome parents Alice Alpert and Edgar Wonzica to share their story of entering the rare disease community by way of their beautiful son Leo being born with Trea…
00:29:57 |
Wed 23 Sep 2020
Mike Porath: Founder and CEO of The Mighty
On today's show, the man, the myth, the legend, Mike Porath, Founder and CEO at The Mighty and member of the Board of Directors at NORD. For those unaware, The Mighty is the world's largest digital h…
00:24:58 |
Wed 09 Sep 2020
Peter Saltonstall: President and Chief Executive Officer of NORD
What a great way to kick off the NORDpod series, because on today’s show host Matthew Zachary will be speaking with the man, the myth, the legend Peter Saltonstall, President and Chief Executive Offi…
00:28:56 |
Wed 26 Aug 2020
Welcome to NORDpod (Teaser)
Welcome to NORDpod™, the voice of rare disease and the official podcast of The National Organization of Rare Disorders (NORD®), a 501(c)(3) patient advocacy organization dedicated to individuals with…
00:03:20 |
Thu 30 Apr 2020
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