RARING
Activity Overview
Episode publication activity over the past year
Episodes
Season Finale: The FDA's Dr. Kathleen Donohue and RDCA- DAP
22 Jun 2022
Contributed by Lukas
Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes Dr. Kathleen Donohue, Director of the Division of Rare Diseases and ...
Living With Trichotillomania: Pageant Queen Sarah Pennington
08 Jun 2022
Contributed by Lukas
You're in for a treat on today's episode of NORDpod as I welcome chronic illness advocate Sarah Pennington to the show. Since the age of 11, Sarah has...
Paying It Forward: Young Adult Brain Cancer Survivor Rob Long
25 May 2022
Contributed by Lukas
Rob Long is the Executive Director at Uplifting Athletes, a nonprofit organization that inspires the rare disease community with hope through the powe...
The Incredibly Talented Mr Bobby Foster
11 May 2022
Contributed by Lukas
Bobby Foster is a content creator, a rapper/producer, a spoken word poet, and a certified life coach who was diagnosed with cystic fibrosis at birth.&...
The Patient Experience: Philip Bright
20 Apr 2022
Contributed by Lukas
Today on NORDpod, Matthew Zachary welcomes Phillip Bright, a senior at The University of Kentucky diagnosed with Hereditary Hemorrhagic Telangiectasia...
One Piece Of The Puzzle: Dr. Adrienne Hammill
13 Apr 2022
Contributed by Lukas
Dr. Adrienne Hammill is Research Director of the Hemangioma & Vascular Malformation Program and Director of the HHT Center of Excellence at Cincin...
From Pain To Purpose: Kari Luther Rosbeck
30 Mar 2022
Contributed by Lukas
Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Scler...
Chris Anselmo: The Accidental Muscular Dystrophy Advocate
16 Mar 2022
Contributed by Lukas
Chris Anselmo is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease ...
Rare Disease Day 2022 with actor Adam Rose
25 Feb 2022
Contributed by Lukas
Welcome to Season Four of NORDpod, the voice of rare disease. Kicking off 2022, and in recognition of Rare Disease Day, we are proud to welcome actor ...
Dr. Edward Neilan: NORD's Chief Medical and Scientific Officer
22 Dec 2021
Contributed by Lukas
On the show today, we welcome Dr. Edward Neilan, NORD's own Chief Medical and Scientific Officer. In this role, Ed oversees medical and research initi...
[BONUS] The 2021 NORD Breakthrough Summit
08 Dec 2021
Contributed by Lukas
Today’s extra-long, extra-special BONUS episode is brought to you from the 2021 NORD Breakthrough Summit. Every year, NORD hosts its flagship confer...
One Father's Barefoot 1,200 Mile Journey
24 Nov 2021
Contributed by Lukas
Chris Brannigan, a major in the British Army, took off his boots for a 1,200-mile barefoot walk down the eastern seaboard of the United States in an e...
Meet Kam Redlawsk: Disability Advocate
10 Nov 2021
Contributed by Lukas
On the show today, Kam Redlawsk is a designer, illustrator, writer, and disability advocate. After five years of being consistently misdiagnosed and n...
The Next Generation of Rare Disease Advocate
27 Oct 2021
Contributed by Lukas
Joining me today is Lewis Freese, an incredible young man fresh off the heels of being diagnosed with a rare disease during the pandemic, no less. (I ...
The Strength of Families
13 Oct 2021
Contributed by Lukas
On the show today, Aprill Lane is a mother of five and rare disease and infertility advocate — and you do not want to mess with her. She and he...
Rare Cancer Day: An Interview With Dan “Dry Dock” Shockley
29 Sep 2021
Contributed by Lukas
In celebration and recognition of Rare Cancer Day, I had the pleasure of speaking with Dan “Dry Dock” Shockley. Dan is a retired Navy, Operation D...
Sturm and Drang: One Disabled Journalist’s Story
15 Sep 2021
Contributed by Lukas
Kicking off Season 3 of NORDpod, I am joined by Karina Sturm, a disabled journalist, blogger, author, and filmmaker who tries to connect with chronica...
Policy Matters: One Dad's Journey
14 Jul 2021
Contributed by Lukas
On the show today, Nick Kirchhof, a volunteer state ambassador in Colorado and member of the newly established Policy Steering Committee for NORD's Ra...
NORD's Rare Disease Advisory Councils
30 Jun 2021
Contributed by Lukas
On the show today, it's all about Rare Disease Advisory Councils – or RDACs, for short. RDACs provide a platform for the rare community to have a st...
Fifteen Months Later...
09 Jun 2021
Contributed by Lukas
Today on NORDpod, we welcome back Lesli Nordstrom, Director of Marketing and communications at NORD. As returning champion to the show, she’s back t...
Rare Voices of NORD: Jo-Ann D'Angelo
26 May 2021
Contributed by Lukas
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...
Jeff Goldstein and NORD's RareLaunch Research Ready
12 May 2021
Contributed by Lukas
On the show today: Jeff Goldstein, President, and Founder of the Lung Transplant Foundation, a nonprofit organization that provides education and emot...
Adolescent and Young Adult Rare Disease: Seth Rotberg's Story
28 Apr 2021
Contributed by Lukas
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 th...
Rare Disease Research: What's All This Then?
14 Apr 2021
Contributed by Lukas
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 re...
Ungeeking The Speak: Dr Rachel Bailey Talks "Gene Therapy 101"
31 Mar 2021
Contributed by Lukas
Dr. Rachel Bailey joins me today on the program. She is an Assistant Professor of the Center for Alzheimer's and Neurodegenerative Diseases and Pediat...
A Conversation With Yann Le Cam: EURODIS Co-Founder and Chief Executive
17 Mar 2021
Contributed by Lukas
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 ...
Season Two PREMIERE with CEO Peter Saltonstall
03 Mar 2021
Contributed by Lukas
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 Saltonst...
[BONUS] Opening Plenary: 2020 LRLS Patient and Family Forum
23 Dec 2020
Contributed by Lukas
At NORDpod, we share our individual stories and experiences through bi-weekly conversations to celebrate (and sometimes commiserate) all the ways rare...
Welcome to the NORD Rare Cancer Coalition
16 Dec 2020
Contributed by Lukas
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...
Prescription Drug Compliance, Adherence, and Robots, OH MY!
02 Dec 2020
Contributed by Lukas
On the show today, Tom Rhoads, advocate, caregiver, and Founder and CEO at Spencer Health Solutions, whose mission is — if we may so paraphrase — ...
Sarah Hill: A Young Life, Interrupted
18 Nov 2020
Contributed by Lukas
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, o...
More Telehealth with Pamela Gavin, Chief Strategy Officer at NORD
04 Nov 2020
Contributed by Lukas
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 Telehea...
Crisis Management: How To Endure With Style
22 Oct 2020
Contributed by Lukas
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 D...
[BONUS] #NORDingOut | Meet the Founders of NORDpod
14 Oct 2020
Contributed by Lukas
On this extra special BONUS EPISODE of NORDpod, it’s our very own Lesli Nordstrom, Director of Marketing and Communications! AND... In an epic ...
Telehealth: From Bogeyman to Clinical Practice
07 Oct 2020
Contributed by Lukas
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 abou...
Telehealth: A Lifesaver For One Rare Disease Family
23 Sep 2020
Contributed by Lukas
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 wa...
Mike Porath: Founder and CEO of The Mighty
09 Sep 2020
Contributed by Lukas
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 una...
Peter Saltonstall: President and Chief Executive Officer of NORD
26 Aug 2020
Contributed by Lukas
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 Pe...
Welcome to NORDpod (Teaser)
30 Apr 2020
Contributed by Lukas
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...