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NORDpod

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Welcome to NORDpod™, the voice of rare disease and the official podcast of the National Organization for Rare Disorders (NORD®). We are one community dedicated to those impacted by rare disease, and, together, our voices are louder.
 
Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.
 
ᓂᐱᕗᑦ, ᐃᓄᐃᑦ ᓄᓇᖃᑎᒌᑦ ᓇᓚᐅᑎᑯᑦ ᑐᓴᕐᓴᐅᓚᕐᓂᐊᑐᑦ CKUT 90.3FM ᑯᑦ ᒪᓐᑐᔨᐊᓚᒥ. ᖃᓪᓗᓇᑦ ᓄᓇᖓᓂ ᓯᕗᓪᓕᐸᑦᓯᐊᒥ ᑐᓴᕐᓴᐅᓚᕐᓂᐊᑐᖅ ᐃᓄᓐᓄᑦ ᐊᐅᓚᑕᐅᓗᓂ ᐊᒻᒪᓗ ᑲᑎᑎᑦᓯᔪᖅ ᐃᓄᓐᓂᑦ ᖃᓪᓗᓇᓂᒥᐅᓂᑦ. ᑐᓴᕐᓂᔭᕐᑐᑦ, ᑐᓴᕋᑦᓴᓂᑦ ᐅᖄᔪᑦ, ᐅᓂᑲᑐᐊᑐᑦ ᐊᒻᒪᓗ ᐊᐱᕐᓱᑕᐅᔪᓂ ᑐᓴᖃᑦᑕᓚᖓᒐᑦᓯ ᐅᓪᓗᒃ ᐱᒋᐊᓚᕐᑐᖅ ᐅᑦᑐᐱᕆ 6, 2015 CKUT 90.3FM ᑯᑦ ᒪᓐᑐᔨᐊᓪᒥ. ᐃᓚᐅᒍᒪᕖᑦ! ᐅᖃᐅᓯᑦᓴᖃᕐᐱᑦ, ᓇᓚᐅᑎᒃᑯᑦ ᐃᒻᒥᓂᒃ ᑐᓵᒍᒪᕖᑦ, ᓂᐱᕗᑦᑯᓐᓃᑦ ᐃᑲᔪᕐᑎᐅᒍᒪᕖᑦ ᑐᓴᕐᓴᐅᓂᒃᑯᑦ. ᐃᑲᔪᕐᑎᐅᒍᒪᒍᕕᑦ ᒪᐅᖓ ᐊᓪᓚᕕᖃᒍᓐᓇᑐᑎᑦ nipivut@gmail.com ᐃᑲᔪᕐᑎᒌᑦ: ᓄᓇᓕᕐᔪᐊᑦ ᐱᕙᓪᓕᐊᓂᖓᓂᑦ ᕿᓂᕐᑏᑦ ᐃᓕᓐᓂᐊᕕᕐᔪᐊᖅ (Concordia University) The Cabot Square Project, CKUT Native Solidarity News ------ Ni ...
 
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show series
 
In this episode, we discuss an ultra-rare genetic condition with Carole Bakhos of Jordan's Guardian Angels. To find out more about Jordan's Syndrome and how you can support this important nonprofit, check out their website here. Their podcast, "A Rare Reality," is available here or on your favorite podcast platform.…
 
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 t…
 
In this episode, we discuss narcolepsy and the results of a recent clinical trial investigating FT218 for efficacy in treating excessive daytime sleepiness and cataplexy. Dr. Asim Roy, the medical director of the Ohio Sleep Medicine Institute and a lead investigator in the REST-ON study, joins us.To learn more about FT218 and the clinical trials, v…
 
In this episode, we discuss a condition called periodic paralysis with Dr. Steve Cannon, professor and chairman of the department of physiology at the David Geffen School of Medicine at UCLA and medical advisor with the Periodic Paralysis Association. Periodic Paralysis is a rare genetic disorder that is characterized by attacks of paralysis, weakn…
 
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 …
 
In this episode, we discuss Leigh Syndrome, a rare mitochondrial disease, with Kasey Woleben and Sophia Zilber of the Cure Mito Foundation. We talk about the importance of patient registries and how rare disease patients and families band together to work for a better future. To learn more about Leigh Syndrome and the Cure Mito Foundation, visit th…
 
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 welcomed into the club no one asks to join when their daughter Hayden was diagnosed with an extremely rare condition known as Cystinosis. In navigating these …
 
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 NORD Director of Policy Heidi Ross, your one-stop human shop to understanding what these councils are, and how you – the listener – can take an active rol…
 
In this episode, we sit down with Cher Bork and Roberta Smith of the Alagille Syndrome Alliance. We discuss how to support people with this rare condition and preview some upcoming events. To learn more about the Alagille Syndrome Alliance and its efforts visit www.alagille.org.By Patient Worthy
 
We sit down with Rebecca Aune and Jack Timperly to talk about the upcoming NORD Patient and Family Forum on June 26 and 27. We discuss what's planned for the event, the annual Rare Impact Awards and why it's important to have rare patients involved in advocacy and educational programs. To register for the Living Rare, Living Stronger: NORD Patient …
 
In this week's episode, we sit down to talk with author, life coach and Patient Worthy contributor Tom Seaman. We discuss his journey through diagnosis with dystonia, how it has changed his approach to life and ways to adapt to adversity. For more information about Tom, visit his website at www.tomseaman.com.…
 
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 inv…
 
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 o…
 
This week, we speak to Jamas LaFreniere, president and founder of the Sophie's Hope Foundation and CureGSD1b -- two nonprofits dedicated to finding a cure for Glycogen Storage Disease Type 1B. GSD is a group of rare metabolic disorders characterized by a missing enzyme that allows the liver to produce glycogen. Learn how to support the Sophie's Hop…
 
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 Ou…
 
In this episode, we discuss rare disease dermatology with Dr. Steven Chen, MD of Harvard Medical School. Pemphigus and pemphigoid are rare, auto-immune blistering diseases that affect the skin. Learn more about these two conditions at the International Pemphigus and Pemphigoid Foundation. Find out more about Dr. Chen's work in the field of dermatol…
 
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,…
 
This week, we speak with Lindsey Cundiff of the EveryLife Foundation for Rare Diseases about the 2021 RAREis scholarship. This fund helps adult rare disease patients achieve their educational goals. We're also joined by Veronica Tingzon, a 2020 scholarship recipient, who talks about her experiences pursuing a nursing degree.Applications for the 202…
 
This week, we speak with EMT and narcolepsy advocate Tara O'Conner about her recently published article on PatientWorthy.com. Tara talks about her journey to diagnosis, why narcolepsy is an under-diagnosed condition and ways friends and family can be supportive of someone with the condition.Read Tara's article here.…
 
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 …
 
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…
 
This week, Colby talks to Nick Giallourakis, the co-founder and executive director of Elephants and Tea, a non-profit media outlet dedicated to sharing patient voices in the adolescent and young adult cancer community.Find out more about Elephants and Tea here.Their podcast, "Spilling Tea With the G's" is found on YouTube here.…
 
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 d…
 
This week, we speak with Annie Kennedy from the EveryLife Foundation about their groundbreaking study examining the economic burden of rare disease. We're joined by Marissa Penrod from Team Joseph, a Duchenne muscular dystrophy nonprofit to discuss how these numbers assist in rare disease advocacy. Read the full study here: www.everylifefoundation.…
 
This week, Colby speaks with Camelia Isaic from HAE Junior in the Czech Republic to discuss her organization's ongoing efforts to improve the lives of HAE patients. Find out more about HAE Junior at www.haejunior.cz. For more information about the Fight the Swell podcast, visit: https://bit.ly/3ojRV9Q…
 
Colby speaks with Gina Glass, the founder of the Dreamsickle Kids Foundation in Nevada. Her sickle cell disease organization has helped to raise awareness and form legislation centered around access in that state. Gina speaks about her ongoing efforts, how to support family members with sickle cell, and what's on the horizon. Find out more at www.d…
 
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 D…
 
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 …
 
In this episode, Colby speaks with Taylor Anne Burtz and Peter Zdziarski of the Glanzmann's Research Foundation. Glanzmann's thrombasthenia is rare genetic condition characterized as a blood clotting disorder. Taylor and Peter discuss their personal experiences with the condition and the foundation's goals of connecting patients and advancing resea…
 
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 an…
 
Sunni speaks with Adam Settle and his family about the new book chronicling Adam's life with cobalamin C deficiency. The genetic condition can cause blindness, nervous system issues and other symptoms. Learn more about Adam and his book here: https://adamsettle.wordpress.com/ As mentioned in the intro, check out the "Fight the Swell" HAE podcast on…
 
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 …
 
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 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 …
 
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 resea…
 
In this episode, Ilana and Rebekah talk with Darlene Shelton, the founder of Danny's Dose. It's a nonprofit dedicated to changing emergency medical protocols for chronic illness and rare disease patients. This conversation was recorded at the NIH Rare Disease Day in Februrary, 2020 -- the last in our series of conversations with patients on the fro…
 
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 prec…
 
In this episode, Sunni talks with illustrator J.G. Jones, who has worked as a comic book artist for almost 25 years. Jones, who was diagnosed with a type of rare blood cancer, is working on a new project that is bringing attention to myeloproliferative neoplasm patients through a combination of story and illustration.…
 
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 …
 
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 way of their beautiful son Leo being born with Treacher Collins syndrome, a very rare genetic disorder with fewer than 20,000 US cases per year. Edgar, a practicing psychiatrist with a background in cli…
 
In this episode, Ilana has a conversation with Jansen's Foundation president and founder Neena Nizar. Jansen's Disease is one one of the rarest disorders in the world, with Neena reporting only 10 known cases worldwide when she started her foundation in 2017. This interview was recorded in February 2020 at NIH Rare Disease Day. Since then, Neena re…
 
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 unaware, The Mighty is the world's largest digital health community online at TheMighty.com and via a free mobile app for iOS and Android. 3MM members can't be wrong, and I can attest that this. We talk …
 
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 commu…
 
In this episode, managing editor Ilana Bean talks with disease advocate Whitney Carter about her journey to multiple diagnosis and how it led her to getting involved patient awareness. Recorded at the NIH Rare Disease Week in February 2020.By waithowdoyouspellthatraredisease
 
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