show episodes
 
Welcome to NORDpod™, the voice of rare disease and the official podcast of the National Organization for 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.
 
If you or someone you love is affected by a rare disease, you likely have more questions than answers. That’s why we’re here. Rare Disease Connection, and our additional resources on RareDisease.com and YourDNA.com, brings together the people whose expertise can explain what you’re facing. From diagnosis, to prognosis, to treatment options, all the way to questions like “Who do I talk to? Where are the people who’ve been through this before?”. We have the answers, direct from the experts and ...
 
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 laugh and learn about issues that impact people living with diseases our doctors can't to spell.
 
This is CoRDS Cast, a rare disease podcast created by the team at Sanford Research. Our rare disease registry, CoRDS, connects patients and researchers everywhere. Here, you'll hear interviews with patients, patient advocates, physicians, and researchers to raise awareness about the 7,000 rare conditions affecting 1 in 10 people worldwide.
 
Welcome to the because we are a strong podcast. A podcast inspired by stories of struggle and strength. A place where you can feel safe enough to share every part of your rare story. The good, the bad, the happy, and anything in between. Many times those in the rare disease community feel isolated from the rest of the world. rare disease comes with its own set of unique challenges, ones that are hard for the outside world to understand. Through our stories, we can bridge the gap between a la ...
 
Rare in Common is a podcast about the unique stories of people affected by rare disease. Host Andra Stratton, a rare disease advocate, speaks with different members of the rare disease community, including patients, caregivers, healthcare professionals, and researchers. Join us as we tackle topics such as FDA approvals, national awareness campaigns, finding hope and support within the rare community, and the extraordinary challenges of living with a rare disease. Click. Listen. Feel.
 
INNERSIGHT FREEDOM Frank Perino - Host Suzanne Tarazi-Ferraro “SUZLADY” - Co-Host INNERSIGHT Means FREEDOM Advocates for the Disabled! INNERSIGHT FREEDOM fights for Independence, Empowerment, Equality, Total Accessibility, and Disability Rights! The money that should be used to change the system as it stands, has failed the disabled. Here are some ways the system has failed and neglected the needs of the disabled: [1] Disabled individual denied a service dog with out a 3rd party fair hearing ...
 
Derek and Victoria are no strangers to chronic Illness. Beyond Your Diagnosis is a podcast about two strangers with two completely different chronic illnesses who found each other through the power of social media. Join them for the tears, the laughter and the “did they just really say that?!” moments while they both continue to navigate the long and winding road of their chronic illnesses.
 
There are more than 7,000 documented rare conditions in the world. While there is no known cure for some conditions, where there is a cure (or maintenance through medicines is possible), the cost of medication is exponentially high to bear. This podcast will focus on the status of rare conditions in India, which has been talked about very little in Indian society. It will be a one-of-its-kind attempt in India to document the gamut of challenges and achievements of people with rare conditions ...
 
Every generation strives to make the lives of our children happier, healthier and more productive. From cases of otitis media and current lipid management strategies, to the latest treatment options for traumatic brain injury, and the manifestation of rare chromosomal abnormalities, ReachMD explores the realm of children's health with a balanced lineup of leading medical experts in pediatrics and adolescent medicine. Join us to learn more!
 
Since 1989, Patient Services Incorporated has restored hope and health to chronic and rare disease patients. We truly admire the many perspectives we come across in our line of work. This inspired our new podcast, Rare Perspectives, where we go beyond the diagnosis and explore the heart of the experience. Our goal is to shed light on the paths that patients walk and highlight different perspectives. We hope their stories help to educate you about chronic illness.
 
Welcome to Patient Paradox Podcast. My name is Mark Sleeper and I’m 30 yrs. old living with a chronic, life threatening disease called Cystic Fibrosis (or CF the easier name). I’m here to share the untold stories of some truly inspiring people who are battling or have battled life threatening health conditions. Along the way we will hear from brilliant doctors too.
 
Welcome to the Mission Matters Innovation Podcast with Adam Torres. Interviews are released daily featuring leaders in a 10-15 minute format. Our podcast is designed for busy people on the move. No fluff. All content. Follow Adam on Instagram at Ask Adam Torres for up to date information on book releases and tour schedule. APPLY to be interviewed by Adam on our podcast: https://missionmatters.lpages.co/podcastguest/ FOLLOW Adam on Instagram https://www.instagram.com/missionmattersinnovation/
 
The Art of Excellence is an in-depth interview-style podcast about people who have accomplished great things in their lives. The goal of the show is to deliver inspiring stories from ultra-successful entrepreneurs, athletes, entertainers, authors, thought leaders and anyone doing something extraordinary. We will explore the backgrounds, talent, work ethic, sacrifices, mental outlook and serendipity that led to their success.
 
Sounds of Science is a monthly podcast about beginnings: how a molecule becomes a drug, how a rodent elucidates a disease pathway, how a horseshoe crab morphs into an infection fighter. The podcast is produced by Eureka, the scientific blog of Charles River, a contract research organization for drug discovery and development. Tune in and begin the journey.
 
The Syneos Health Podcast Series dissects some of the most complex issues biopharma leaders are facing today. Our clinical and commercial experts provide time-tested solutions, as well as perspectives on the news of the day. Hosted by Jeff Stewart, a long-time industry consultant who has advised biopharma leaders on licensing, mergers and acquisitions, pricing and market access, commercialization and go-to-market strategies, each episode explores the challenges and considerations involved wi ...
 
PSC Mami: Stories at the intersection of PSC and parenthood. You are diagnosed with a rare, incurable disease. You are young. You had a vision for your future. You wanted kids. But can you? As a parent you want the best for your kids, but then they are diagnosed with PSC, what does their future hold? People who have been there talk about how a diagnosis of Primary Sclerosing Cholangitis, a rare autoimmune disease, reshaped their vision of their lives and parenthood.
 
Two Rare Mama Bears, a Cure CMD Podcast - where we discuss all things Congenital Muscular Dystrophy and Rare Disease...All subtypes, ages, abilities and topics with the intent to connect the CMD community. This podcast is about bringing together affected individuals, their family, researchers, clinicians, industry, and policy-makers to have conversations with the goal of moving the needle on the mission of Cure CMD. Hosts: Megan Meyer and Matty Manley.
 
There are real differences in men's and women's health concerns. The life expectancy gap is decreasing between men and women, but men still deal with higher rates of cardiovascular disease, prostate and testicular cancers, fluctuating testosterone levels, and fertility issues. Women’s health issues include cancer, reproductive and sexual health issues, osteoporosis prevention and management, nutrition and sports medicine. This series focuses on new developments in the diagnosis and treatment ...
 
Discomfort Zone features immersive stories on chronic illness and disability showcasing our vulnerability, wellness, and resilience. My guests and I find comfort by turning towards discomfort, welcoming it, and laughing at it. I am an engineering graduate who reinvented himself as a podcaster and chronic illness/disability advocate after developing fibromyalgia, myalgic encephalomyelitis (ME/CFS), and postural orthostatic tachycardia syndrome (POTS).
 
The goal of our “Ask the Expert” podcast series is to share the latest research and information on rare neuroimmune disorders and provide an avenue for individuals diagnosed with these disorders and their family members to ask questions to experts who specialize in these disorders. The podcasts are moderated based on questions submitted by our community. We would like to hear from you. If there are topics that you would like us to address in our podcasts, you can share your thoughts by sendi ...
 
Get knowledge and inspiration to apply artificial intelligence to drug development. Discover startups applying machine learning to biomedical research. Hear how biotech and pharma companies use AI to speed discovery and cut costs. Learn from academic researchers pushing boundaries in applying computation to biology. We interview leaders transforming drug development with data and algorithms. Subscribe now and never miss an episode!
 
A scientific abstract isn’t supposed to be as hard to interpret as modern art. Nikki Teran and Ray Futia, two Stanford Biosciences PhD students, give you an inside look into the research their peers are doing. Each episode they are joined by the author of a recent peer reviewed paper to discuss the paper's abstract in plain English and make it a little Less Abstract.
 
The NASN School Nurse Chat, a podcast hosted by NASN Executive Director Donna Mazyck, highlights timely student and school health topics of interest to school nurses and other professionals focused on student health and well-being. For more information about the NASN School Nurse Chat podcast, contact Jon Lemich, NASN Grants and External Partners Coordinator, jlemich@nasn.org.
 
"Things work out until they don't." Ain't life a bitch? Maybe we should celebrate it nonetheless. Friends With Deficits is a fun, honest, and sometimes brutal exploration into the human condition, often over drinks. Host Adam Sultan talks with old friends and friends-to-be who are dealing with unusual, rare, or strange predicaments that bring life into focus. After all, we're all gonna die--would you like that with a twist?
 
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Hear from the experts in our conversations on a complex genetic condition: Prader-Willi Syndrome (PWS). We cover PWS diagnosis, new treatment options, and how to connect with the PWS community. Experts in this episode include: *Bri Dingmann, MS, LCGC: Genetic counselor at Seattle Children’s Hospital *Virginia E. Kimonis, MD: Clinical geneticist at …
 
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…
 
Decentralizing clinical research can have many benefits such as cutting costs. In this episode, Adam Torres and Harsha K. Rajasimha, Founder and CEO of Jeeva Informatics and Founder and Chairman of Indo US Organization for Rare Diseases, explore the benefits and process of decentralizing clinical research. Follow Adam on Instagram at https://www.in…
 
In episode 123, The Dudes asked why we tend to pull away when things get hard such as with a Rare Disease Diagnosis or another life changing event. The discussion did not end with a clear answer so Sean and Kyle Reached out for some professional help. Enter Dr. Al. Albert Freedman, Ph.D. has a unique voice as a psychologist and the father of an adu…
 
On this episode of CoRDS Cast, Alyssa sits down with the Chloe Barnes Advisory Council on Rare Diseases. We will be speaking with Erica Barnes who is the co-founder of the organization, Karl Nelson who is a Physician Assistant and also is diagnosed with a rare condition called ectodermal dysplasia, and Dr. Kris Ann Schultz who is a pediatric oncolo…
 
Krystal Biotech (#KRYS) is using a novel gene therapy platform to treat various rare diseases. Their primary indication is Dystrophic Epidermolysis Bullosa (DEB) with an upcoming Phase 3 readout in 2021. Michael McGuire from WX Capital and I discuss the bull case for rare disease indications, the epidemiology of DEB and what the company might price…
 
Many schools closed in the spring, during the first wave of the coronavirus pandemic. Many opened in the fall. Staff Writer Jennifer Couzin-Frankel joins host Sarah Crespi to talk about what was learned in spring about how coronavirus spreads in schools that might help keep children safe as cases surge once again.Also this week: What makes leaves f…
 
2020 a year no one could have predicted. One we honestly weren’t sure how to be thankful for. But once we sat down and thought about it we realized despite the ridiculousness of 2020, without it we wouldn’t have accomplished some of what we have. Sometimes it’s important to acknowledge and be thankful for the struggles. After all, they can get you …
 
While gene therapies provide great promise for people with rare, genetic diseases, the pursuit of these one-time treatments may not seem economically viable to commercial developers. In the case of ultra-rare conditions, the patient populations may be so small that it may not be possible for companies to recoup their investments, let alone make a p…
 
Persons with disabilities make up over 2 percent of the Indian population. While not all persons with disabilities are rare individuals, rare diseases are chronic and can lead to major disability. Both – rare individuals and persons with disabilities – have needs that are different from the larger population. From lifesaving medicines not reaching …
 
DISABILITY IS A BADGE OF HONOR. Creating Strength and Empowerment for People with Disabilities Erin Noon Kay is the CEO & Founder of Claiming Disability Inc. Erin identifies as a "fierce disabled entrepreneurial woman," with Cerebral Palsy. She uses a walker and wheelchair occasionally, but she believes it's "OK" to look disabled and is working har…
 
Hear from the experts in our conversations on a rare, hereditary disorder: Galactosemia. We cover Galactosemia diagnosis, new treatment options, and how to connect with the Galactosemia community. Experts in this episode include: *Judith Fridovich-Keil PhD: Principal investigator in the Fridovich-Keil lab at Emory University. *Anne Kozek, MS, RD, L…
 
On this episode of Life, the Universe & Everything Else, Laura leads the panel on a discussion of several nutrition myths that just won’t die. Topics include expiry dates, nightshades, and pink salt. Life, the Universe & Everything Else is a podcast that explores the intersection of science and society. Expiry Dates: Expiration Dates Don’t Mean Wha…
 
SUPER73 has achieved rapid growth through it's viral marketing efforts. In this episode, Adam Torres and Michael Cannavo, Co-Founder and CMO at SUPER73, explore why SUPER73's marketing efforts have been so effective in gaining a loyal following while building a community. Follow Adam on Instagram at https://www.instagram.com/askadamtorres/ for up t…
 
Bootcamps are an important part of tooling up for a career using coding skills. In this episode, Adam Torres and Marcelo Ricigliano, Co Founder and CEO at 4Geeks Academy, explore the 4Geeks Academy bootcamps and what it's participants can expect. Follow Adam on Instagram at https://www.instagram.com/askadamtorres/ for up to date information on book…
 
Effie Parks immediately related to Rare Disease podcasts when her son Ford was diagnosed with CTNNB1. However she soon caught up with all of the episodes and came to the end of her life line. So she created the thing that she needed the most. She discusses disability as diversity and connects with parents and many others in the Rare Community throu…
 
In this episode of Running in Production, Kye Russell goes over running aformative school assessment tool for 800+ schools in Australia. It’s built withDjango and it’s been running in production since 2017 on AWS. Kye is the solo developer on the project. It’s a monolith split across 10+Django apps. They’ve gone all-in with a bunch of AWS services …
 
TUNNING IN WITH YOUR AUTISTIC DIRECTOR MANAGER, YOUR ADVOCATE , YOUR HOST MARIA ILIOU FOR IMPROMPTU QUIETUDE SCENE ___THEME AUTISTIC ARTIST __MEDITATION ...AUTISM WEEKEND RADIO SHOW MARIA INTEVIEWING CARISSA SHE IS PUBLISHED AUTHOR...2 BOOKS ALSO HER POEMS IS PUBLISH IN ANTHOLOGIES .CARISSA STATED WRITTING TEN YEARS AGO SHE WERE INSPIRIED AND HER P…
 
Our guest on this Special Fathers Network Dad to Dad Podcast is New York Times best selling author, Bill Danko. Sadly, Bill's dad, Milton, a WWII veteran, died at 38 from MS and his younger brother, Tony, was also diagnosed at 21 with MS and died in 2015 at age 68. Through faith, with gratuity, and an incredibly upbeat attitude, Bill keeps keeping …
 
Hey peeps! It was just Kristine this episode and I am back this week again hosting solo but we have another great episode for you today as I have the pleasure of sitting down with Orah Lasko who is the mother of Luke; Luke has a rare genetic disorder syndrome called Hao Fountain syndrome. As with to many of these rare genetic disorders Jake is amon…
 
Daniel de Boer became a biotech executive after his son was diagnosed with the genetic respiratory disease cystic fibrosis. He founded ProQR Therapeutics with an initial focus on developing RNA therapies to treat cystic fibrosis, but the company has since turned its attention to a group of rare, inherited retinal diseases that cause blindness. We s…
 
These days, about half of the protein the world’s population eats is from seafood. Staff Writer Erik Stokstad joins host Sarah Crespi to talk about how brand-new biotech and old-fashioned breeding programs are helping keep up with demand, by expanding where we can farm fish and how fast we can grow them.Sarah also spoke with Jan Claesen, an assista…
 
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 …
 
We are back with another episode of Because we Are strong. Today we are sitting down with Effie, the mother of a rare disease warrior and a woman determined to make a difference. Effie has created her own podcast called Once upon a Gene, in honor of her son Ford who was born with a rare genetic disease called CTNNB1 syndrome. Many genetic syndromes…
 
In this episode of Running in Production, Anand Kulkarni goes over his appbuilder and deployer platform using Django. Over 15,000 customers have builtand deployed their apps through it. It’s running on 1,000+ Heroku Dynos and hasbeen up and running since early 2017. Anand covers having a mono repo for the 100k+ lines of back-end code,switching to a…
 
Episode Notes Rhythm Pharmaceuticals is tackling rare genetic obesity disorders with their MC4R agonist, Setmelanotide. They have 3 upcoming catalysts, the most important being the effect of the compound on a basket of high impact "loss of function" patients (POMC/LEPR-deficient heterozygotes, in particular). I go through all their catalysts in gre…
 
Our guest this week on the SFN Dad to Dad Podcast is Lon Haldeman, one of the world’s most well respected long distance, endurance bike riders of all time. He’s also and a mentor, of sorts, to our host David Hirsch. Lon and his wife Susan, herself a champion bike rider, have two children, Rebecca and Ericka, who sadly passed away just shy of her fi…
 
The economics of developing gene therapies can make it unattractive for biopharmaceutical companies to invest in bringing a gene therapy through development and to the market for ultra-rare conditions. But researchers at the National Center for Advancing Translational Sciences are working to develop a set of gene therapy vectors that can be used in…
 
This week the whole show focuses on keeping cool in a warming world. First up, host Sarah Crespi talks with Senior News Correspondent Elizabeth Pennisi about the latest research into how to stay safe when things heat up—whether you’re running marathons or fighting fires. Sarah also talks with Po-Chun Hsu, assistant professor of mechanical engineeri…
 
Hear from the experts in our conversations on a rare neuro-genetic disorder: Angelman Syndrome (AS). We cover AS diagnosis, new treatment options, and how to connect with the AS community. Experts in this episode include: * Lynne Bird, M.D. - Clinical geneticist and professor at UCSD School of Medicine. * Regina Uribe - Parent advocate of Angelman …
 
Jessica Taylor-Bearman is a bestselling author of the award-winning ‘A Girl Behind Dark Glasses’, which follows her journey as she goes from being a healthy teenager to fighting for her life in hospital with a very severe form of Myalgic Encephalomyelitis. She spent over a decade being completely bedridden and had to relearn how to speak, move, and…
 
Jim McCloskey is the founder of Centurion Ministries, an organization devoted to exonerating wrongfully convicted prisoners who are serving life or death sentences. To date, the organization has freed 64 innocent people. His new book is titled: When Truth Is All You Have: A Memoir of Faith, Justice, and Freedom for The Wrongly Convicted. Some inter…
 
In this episode of Running in Production, Daniele Procida walks us throughtheir cloud platform to manage web apps using Django. 10s of millions of webrequests flow through their client’s applications. It’s running on multiplecloud providers and has been up and running since 2015. Daniele covers the importance of a stable platform when you’re dealin…
 
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