RARING
Matthew Zachary Worldwide
2 Creators
2 Creators
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.
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Best episodes
Top 10 RARING Episodes
Goodpods has curated a list of the 10 best RARING episodes, ranked by the number of listens and likes each episode have garnered from our listeners. If you are listening to RARING for the first time, there's no better place to start than with one of these standout episodes. If you are a fan of the show, vote for your favorite RARING episode by adding your comments to the episode page.
11/10/21 • 30 min
On the show today, Kam Redlawsk is a designer, illustrator, writer, and disability advocate. After five years of being consistently misdiagnosed and not taken seriously, she was diagnosed correctly with a condition called GNE Myopathy, which is a very, very rare degenerative muscle wasting disorder. There's so much to unpack about her that can only be explained by hearing her story and understanding the journey she's undertaken. I'm not too fond of cat poster slogans, but she does make lemonade from her lemons. She has an extraordinary story, has written incredible pieces, and her Instagram will blow your mind. Kam is the very definition of what it means to be an advocate; when no one expects to become one, and they're thrust into the world of rare disease. And now she's giving back and inspiring hundreds of thousands of people. Enjoy the show.
For more information about Kam, visit https://www.kamredlawsk.com.
NORDpod is the official podcast of the National Organization for Rare Disorders. More at https://rarediseases.org.
See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
08/26/20 • 28 min
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 maybe you’ll learn something. Who knows? 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.
04/30/20 • 3 min
Welcome to NORDpodTM, 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
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.
09/15/21 • 35 min
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 word about Ehlers-Danios Syndrome and other chronic illnesses. From giving up her job as a research associate in 2010 to cashing out her life savings to come to the US for better care, Karina has managed to adapt her life around her symptoms and is the accidental advocate you need to hear to know. Through a necessary pivot to journalism, Karina is now one of the most vocal rare disease activists around, and her blog, "Holy Shit I Am Sick," is read by thousands. Her must-watch film, "We Are Visible," is so multi-award-winning and critically acclaimed, there's an endless scroll of credits on the homepage. This is how you advocate. Enjoy our conversation.
NORDpod is the official podcast of the National Organization for Rare Disorders (NORD®) For more information, visit https://rarediseases.org and email [email protected] with comments or feedback.
See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
09/29/21 • 31 min
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 hereditary colon cancer warrior. After his initial colonoscopy, he was recommended for a genetic panel, passed along to specialists, was diagnosed and treated (surgically) for AFAP/hereditary colon cancer all within a two-month span. Since then, Dan has worked alongside leading researchers/clinicians in the field to provide a patient’s perspective as well as raise awareness for rare cancers, destigmatize ostomy bags, and lead a high quality of life as someone living with this condition. In this episode, we explore the positive impact that having access to a quick diagnosis, trained physicians, and ongoing treatment/testing can have on rare cancers. NORDPod is the official podcast of the National Organization for Rare Disorders. For more information visit https://rarediseases.org.
See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
12/23/20 • 83 min
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.
06/08/22 • 34 min
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 Trichotillomania, a disorder that involves recurrent, irresistible urges to pull out body hair. An estimated 330,000 children in the US alone may face Trichotillomania in their early tween/teenage years, a time in your life that may be challenging enough on its own. Sarah decided to do something by taking ownership of her condition, and, after many years of depression and suicidal thoughts, coupled with months in a residential treatment program. The moment she decided to take off her wig instantly transformed her into a vessel for purpose and impact. And so, she has taken on a new challenge: beauty pageants. So prepare yourself for a profoundly inspiring conversation about perseverance, motivation, and how to pay it forward. Enjoy the show.
NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org or email [email protected].
See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
05/26/21 • 25 min
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.
12/16/20 • 32 min
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.
02/23/22 • 34 min
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 amassed a considerable fan base by creating relatable, entertaining, and insightful video segments on TikTok, often sporting a blue cardigan. He is also a rare disease patient, advocate, and activist sharing his story about living with Gaucher’s Disease.
Rare Disease Day is committed to raising awareness for the community. This annual commemoration is focused on the theme of health equity. Part of health care inequity involves a lack of access to an accurate and timely diagnosis, treatment, and information about your disease. By raising awareness and showing your stripes, you can help improve the visibility of rare diseases.
NORDpod is the official podcast of the National Organization for Rare Disorders. For more information, visit https://rarediseases.org.
See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
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FAQ
How many episodes does RARING have?
RARING currently has 41 episodes available.
What topics does RARING cover?
The podcast is about Non-Profit, Health & Fitness, Digital Health, Mental Health, Community, Podcasts, Covid-19 and Business.
What is the most popular episode on RARING?
The episode title 'Rare Voices of NORD: Jo-Ann D'Angelo' is the most popular.
What is the average episode length on RARING?
The average episode length on RARING is 32 minutes.
How often are episodes of RARING released?
Episodes of RARING are typically released every 14 days.
When was the first episode of RARING?
The first episode of RARING was released on Apr 30, 2020.
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