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.

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...

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...

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...

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 &...

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...

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 simplifying the complex world of prescription medication adherence. Tom talks about how to make the patient experience better by taking into account that any diagnosis is a family affair, and there’s more to living with an illness than biology. What do we mean? Well, the stress, anxiety, uncertainty,...

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 life interrupted at a very young age. After being fabulously misdiagnosed and not taken seriously for years, at the age of 16, all of the dots finally connected, and it was correctly identified that she had Wolfram Syndrome. This one’s a heavy hitter, folks. Wolfram is a rare autosomal-recessive...

On the show today: Pamela Gavin, Chief Strategy Officer at NORD. This episode is Part Three in — you guessed it — three-part series on Telehealth… only this time around, it’s all about policy, advocacy, and how the only thing that has ever moved the needle to make life better for patients are patients like you. COVID has forever changed how we value Telehealth and telemedicine to complement the need and/or desire for in-person visits with doctors. And while there are still mass-market...

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 Mary McGowen, Executive Director of the Myositis Association, whose mission is to improve the lives of persons affected by myositis, fund innovative research, and increase myositis awareness and advocacy. How do leaders connect with their communities, partners, donors, and stakeholders when...

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 downtown Manhattan for a LIVE in-person interview with Matthew Zachary and OffScrip Media co-founder and COO Andrew McDowell. Yes, we took all the precautions. Yes, we socially distanced ourselves at the studio table. Yes, we may have been wearing tin foil hats. And yes, it was amazing to have...

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. Perhaps even the telephone when required. Joining us are Dr. Natasha Shur, Medical Geneticist, and Monisha Kisling, a genetic counselor both from Children's National in Washington DC. Telehealth has been around for a long time, but its adoption akin to no one trusting eBay and Amazon in the 1990s with...

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 Officer of NORD. Peter’s been at the helm of NORD since 2008 and has a storied 30-year history of leadership for the private sector and the nonprofit community. And he’s grown NORD into the powerhouse of influence and impact that it is today. We had a great conversation, and I hope you enjoy it. And...

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 rare diseases and the organizations that serve them. We are one community, and, together, our voices are louder. Learn more about NORD at http://RareDiseases.org