RARING

Today on NORDpod, we welcome back Lesli Nordstrom, Director of Marketing and communications at NORD. As returning champion to the show, she’s back to get real about the rare disease community with reflection on the past 18 months. The pandemic’s impact cannot be understated. Millions of lives have been uprooted as we mourn the deaths of hundreds of thousands. But our shared pain and suffering are what make us stronger together. Lesli and Matthew also discuss the unique challenges facing the nonprofit sector and the medical profession in the wake of life being turned upside down. They acknowledge NORD’s role in confronting the crisis head-on by implementing new support programs, financial aid systems, and incubation grants to startup charities in the space.

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 extremely rare facial disfigurement that impacts the bone, muscle, and dental only on one side of the face. There is no cure, and the only treatment is invasive plastic surgery that only impacts the appearance and doesn't address any underlying conditions. Jo-Ann is an extraordinary human being who very bravely shares her remarkable story with us today. She is currently going through the "NORD RareLaunch: Forming a Foundation" program which is helping to incubate and accelerate her nonprofit ambitions. She is a consummate example of how one person can make a difference for so many others. Enjoy the show.

Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 caregivers and raises money for lung transplant research. Jeff was diagnosed in his mid-40s in peak health with Idiopathic Pulmonary Fibrosis — lots of syllables with a very bleak outlook. Eighteen years later, he's still here to talk about not just his incredible story but the extraordinary partnership he's struck with NORD's RareLaunch Research Ready program to kick off their first patient registry for this truly under-voiced community.

We dedicate this episode of NORDpod in memory of Jeff and thank him for sharing his gift and his vision with us. 

Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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.

Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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.

Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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.

Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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.

Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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.

Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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/

Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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 President of the Board of the Fibrolamellar Cancer Foundation and Founding Chairman of the GI Cancer Alliance AND Jim Palma, Executive Director at the Target Cancer Foundation and Vice Chairman of the Board of Directors at NORD. There’s no profit I rare anything. Industry’s gotta recoup their costs by making it up in volume with all the big fancy cancers that get all the attention. Without entrepreneurial and philanthropic efforts by heroes like Jim and John, there would be no progress in the advocacy, research, and support resources for hundreds of thousands. So, to regroup, Why does NORD have a Rare Cancer Coalition? What does it do? Who are their members? How can you join? Is rare cancer considered a rare disease? All those questions and more on the program; because it’s not always about what we have, it’s about what we all have in common. Learn more about the NORD Rare Cancer Coalition here.

Follow us on social @NORDpodcast

See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.