Welcome to NORDpod™, the voice of rare disease and the official podcast of the National Organization for Rare Disorders (NORD®). We are one community dedicated to those impacted by rare disease, and, together, our voices are louder.
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 different. And the same holds true for this community. Joining me is Seth Rotberg, a very vocal leader in the AYA rare disease community and the Founder of Our Odyssey. Seth lost his mother to Huntington’s Disease several years after she was initially diagnosed while he was in High School. He also tested positive for the disease along the way, bringing challenges and opportunities to the life in front of him. His mission is to provide support and resources to the AYA rare disease community to help them reach their full potential. Enjoy the show.
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 discussing NORD’s I AM RARE platform, a patient registry that, with the rare disease community’s help, allows for a better understanding of rare diseases, how to manage them, improve treatments, and generally make life better for so many. All this and more. Enjoy the show.
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 episode is all about those two magic words, no not "COVID Vaccine — those indeed are magic words — no, I'm referring to "Gene Therapy." Yes, Rachel and I are here to give our version of "Gene Therapy 101" Growing up with a younger sibling with cerebral palsy set Rachel off in the direction she took borne of that condition, which explains her passion for science. I asked her how we can "ungeek" the speak, explain complex information to average humans, leverage empathy to improve relationships between doctors and patients, and how optimistic we should all be about the future of medicine. Alright - Let's get to it.
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 have hailed him. We only recently celebrated Rare Disease Day 2021 on February 28th so we thank all of you who participated and remind those who could not that anyone can be a rare disease advocate and activist 24/7/365 by visiting RareDiseaseDay.com. Jann and I talk about the history of rare disease advocacy, his personal experience raising a daughter with Cystic Fibrosis, the lessons he’s learned leading the space over the past 30 years, and what we can all look forward to over the next decade.
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. 2020 was not the best of times, but it was not the worst of times either, as you'll hear from our conversation for NORD. In today's episode, we'll be discussing: Revisiting NORDpod Season One, NORD's awarding $36M to patients through their assistance programs, their pivot to virtual programming pandemic response and COVID Relief Assistance Program, and what's in store for 2021. Enjoy the show. Learn more about NORD.
[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 is a supersized BONUS POD from the 2020 Living Rare Forum plenary session "Rare Storytelling Hour." The session was moderated by Lesli Nordstrom, NORD Director of Marketing and Communications and featured panelists Matthew Zachary and Andrew MacDowell of OffScrip Media, Mike Porath, CEO & Founder of The Mighty and Kam Redlawsk, a designer and patient advocate, Listen in as our special guests explore and share what it means to be storytellers. You can share YOUR own story with us by visiting: https://rarediseases.org/shareyourstory/
So inspiring and informative
Matthew Zachary is HILARIOUS — how does he tackle such heavy topics so gracefully and adding a spark of joy and fun? It’s magic!
I feel warm and fuzzy after listening to each podcast — the voices and perspectives shared are SO INSPIRING.
I never miss an episode. This is one of my top 3 podcasts. THANK YOU NORD!!
NORD is THE most helpful organization out there for resources for people with rare diseases. I’m thrilled about this podcast.
Great episode today!! Really enjoyed listening to it!! Looking forward to the next one!!