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
Season Finale: The FDA's Dr. Kathleen Donohue and RDCA- DAP
Today on NORDpod, Andrew MacDowell stands in for Matthew Zachary, and he welcomes Dr. Kathleen Donohue, Director of the Division of Rare Diseases and Medical Genetics, at the FDA’s Office of New Drug…
00:26:39 |
Wed 22 Jun 2022
Living With Trichotillomania: Pageant Queen Sarah Pennington
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 been managing a condition known as Trichotilloma…
00:34:00 |
Wed 08 Jun 2022
Paying It Forward: Young Adult Brain Cancer Survivor Rob Long
Rob Long is the Executive Director at Uplifting Athletes, a nonprofit organization that inspires the rare disease community with hope through the power of sport. In 1020, as a Pre-Season All-American…
00:31:33 |
Wed 25 May 2022
The Incredibly Talented Mr Bobby Foster
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. He graduated with a degree in creative writing fr…
00:38:01 |
Wed 11 May 2022
The Patient Experience: Philip Bright
Today on NORDpod, Matthew Zachary welcomes Phillip Bright, a senior at The University of Kentucky diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT) at a very young age and has lived an accel…
00:26:57 |
Wed 20 Apr 2022
One Piece Of The Puzzle: Dr. Adrienne Hammill
Dr. Adrienne Hammill is Research Director of the Hemangioma & Vascular Malformation Program and Director of the HHT Center of Excellence at Cincinnati Children's Hospital. Her path to becoming a phys…
00:30:23 |
Wed 13 Apr 2022
From Pain To Purpose: Kari Luther Rosbeck
Kari Luther Rosbeck is the President & Chief Executive Officer of the TSC Alliance, a nonprofit whose mission is to find a cure for Tuberous Sclerosis Complex (TSC) while improving the lives of thos…
00:33:24 |
Wed 30 Mar 2022
Chris Anselmo: The Accidental Muscular Dystrophy Advocate
Chris Anselmo is the Director of Market Intelligence at the Muscular Dystrophy Association but he never envisioned becoming an advocate for a disease he never thought he'd get. After a car crash foun…
00:28:04 |
Wed 16 Mar 2022
Rare Disease Day 2022 with actor Adam Rose
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 and social media influencer Adam Rose. Adam has a…
00:34:10 |
Fri 25 Feb 2022
Dr. Edward Neilan: NORD's Chief Medical and Scientific Officer
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 initiatives, including the Rare Disease Cures Accelera…
00:29:36 |
Wed 22 Dec 2021
[BONUS] The 2021 NORD Breakthrough Summit
Today’s extra-long, extra-special BONUS episode is brought to you from the 2021 NORD Breakthrough Summit. Every year, NORD hosts its flagship conference in October to discuss what’s new, relevant, an…
00:43:39 |
Wed 08 Dec 2021
One Father's Barefoot 1,200 Mile Journey
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 effort to raise funds for the creation of a gene t…
00:33:40 |
Wed 24 Nov 2021
Meet Kam Redlawsk: Disability Advocate
Artist, writer, and disability advocate Kam Redlawsk talks with Matthew Zachary about living with the degenerative muscle-wasting disorder GNE Myopathy and how she uses her art to visually articulate…
00:30:47 |
Wed 10 Nov 2021
The Next Generation of Rare Disease Advocate
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 mean, not that there's ever a good time for this …
00:31:59 |
Wed 27 Oct 2021
The Strength of Families
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 her husband, Brian, tried to have a baby on their own for …
00:33:52 |
Wed 13 Oct 2021
Rare Cancer Day: An Interview With Dan “Dry Dock” Shockley
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 Desert Storm; Enduring and Iraqi Freedom veteran and h…
00:31:08 |
Wed 29 Sep 2021
Sturm and Drang: One Disabled Journalist’s Story
Kicking off Season 3 of NORDpod, I am joined by Karina Sturm, a disabled journalist, blogger, author, and filmmaker who tries to connect with chronically ill people around the world and spread the wo…
00:35:03 |
Wed 15 Sep 2021
Policy Matters: One Dad's Journey
On the show today, Nick Kirchhof, a volunteer state ambassador in Colorado and member of the newly established Policy Steering Committee for NORD's Rare Action Network. Nick and his wife were welcome…
00:29:06 |
Wed 14 Jul 2021
NORD's Rare Disease Advisory Councils
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 stronger voice in state government. Joining us is NOR…
00:25:55 |
Wed 30 Jun 2021
Fifteen Months Later...
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 re…
00:38:11 |
Wed 09 Jun 2021
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