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Rare Disease Advisor's Rare Care Podcast features exclusive interviews with experts and stakeholders from the rare disease community.
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Welcome to the new Rare Kidney Disease Show part of the RKD Scientific Network sponsored by Travere Therapeutics. The Rare Kidney Disease Show is your primary source for cutting-edge insights, expert perspectives, and pivotal updates in nephrology. Led by our panel of experts, explore the advances in glomerular nephropathies through compelling conversations, challenging case studies, and discussions tackling hot topics. Join us as we strive to provide you with the ultimate resource to suppor ...
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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.
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Patient Empowerment Program: A Rare Disease Podcast
n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen)
Join the nano-rare disease community! Interviews features leading physicians, scientists, biotech experts, and patient advocates. Lessons teach core concepts about drugs. Our host Dr. Crooke has led the creation of antisense technology and his foundation, n-Lorem, is using this powerful technology to discover, develop, and provide personalized experimental antisense oligonucleotide medicines to nano-rare patients for free, for life. n-Lorem is a non-profit organization established to apply t ...
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Imagine the excitement of becoming a new parent and then within hours finding out your child has a serious developmental disorder. That is exactly where Sanath Kumar Ramesh found himself in the summer of 2018. One year later, on his son’s first birthday, they found out that their son, Raghav, had an extremely rare mutation of the GPX4 gene. At the time, doctors told them that Raghav may be the only one on the planet with this genetic variant who had lived beyond one month of life. The progno ...
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I'm Aware That I'm Rare: the phaware® podcast is devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because ea ...
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Out of Patients is a no-BS podcast about making healthcare suck less for everyone. Join award-winning host Matthew Zachary each week as he and his guests sardonically deconstruct all the shenanigans in terms normal humans can understand, along with a healthy dose of 80s nostalgia and random pop culture references. So strap in, and let's all make the system less horrible; because advocacy is the only thing that's ever changed anything.
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Welcome to 'My rare disease' podcast. This is a platform where I raise awareness of something that affects 1 in 15 people, rare disease. By chatting to patients, health professionals and advocates, we talk about all aspects of rare disease including relationships, mental health and much more. I cannot wait for you to hear some truly inspiring stories from some absolutely amazing people. From being diagnosed with a rare disease myself at 10 weeks old, it has given me the motivation to give ot ...
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A podcast for parents and families of people living with rare diseases in Ontario. I Care for Rare is a social advocacy campaign, designed to give individuals, families and caregivers living with rare diseases a collective voice for system healthcare AND community support reform.
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Your destination feed for medical, health care and clinical science podcasts courtesy of HCPLive—featuring our shows DocTalk, Rare Disease Report, Heart Team, Overdrive, and Derm Discussions. Music Courtesy of BenSound
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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 laug ...
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Current content form the Popular Science Magazine
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Everyone in the rare disease community has a story and every individual, every parent, every caregiver has a unique story to tell. Insightful Moments: My VIBE is here to tell those stories. We want to tell YOUR real-life stories and experiences from the rare disease community to inspire and remind listeners that we’re all in this together.
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As a new parent of a child with a rare genetic syndrome, I was lost. There was no guide. There was no rulebook. This was not what I had imagined. As I navigated my way through this new reality, I realized something that should have been simple, but was not. A truth that had always been there, but that I had lost sight of for a time - I am not alone. And neither are you. These are the stories of my family, and of families like ours. These are the stories of how we have persevered, cried, bond ...
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Join us for a one-hour rare disease community support group. Here we will discuss the topics that affect your daily life in rare diseases as well as special needs. Being a parent is hard but having a child in rare disease takes a special kind of person and the journey is filled with potholes along the way. The pathway may never be clear, but together we can navigate by supporting each other. P.S. we are not a glum lot!
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The Mighty Podcast infuses the health space with positivity, humor, and vulnerability. Explore topics on mental health, chronic illness, rare disease, disability, and more. Continue the conversation with a community who gets it on TheMighty.com.
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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.
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Disclaimer: Opinions shared in this podcast may not reflect the opinions of Catalyst Pharmaceuticals, Inc. Let’s talk about rare diseases. The LEMS Aware Podcast lets you hear directly from people in the Lambert-Eaton myasthenic syndrome (LEMS) and other rare disease communities on topics that matter. We talk with patients and caregivers who want to share more than their story – they want to ignite conversations about LEMS and common rare disease experiences and needs. Join us as we talk abo ...
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WeHaveAFace.org Inc. has created "WeHaveAVoice" Radio for the Huntington's and Juvenile Huntington's disease community. It is time for the community to speak out...speak up! We must openly share what all of us in the Huntington's community experience on a daily basis! Removing the stigmas and broadening social awareness and acceptance is paramount! Visit: www.WeHaveAFace.org/Radio for more information.
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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 ...
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We explore the unique lives and work of our community's leaders, professionals, and inspirational members--conversations about the challenges, courage, and dedication that are pillars of this community. We share new perspectives, insights, and knowledge about the rare disease that impacts our daily lives and guides our individual journeys. The National MPS Society exists to cure, support and advocate for MPS and ML.
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Autoimmune Community Voices podcast features conversations with the diverse autoimmune community. This is a podcast of the Autoimmune Community Institute - acicommunity.org
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This new podcast from the Pulmonary Hypertension Association (PHA UK) is the ideal listen for anyone living with the rare disease PH. It builds on the chatty style of our member magazine, EmPHAsis, to bring listeners news, conversations, advice, analysis and more. Our podcast isn’t just for patients; it’s for everyone in the PH community - friends, family, carers, and medical professionals too. You’re all welcome here :-) Listen to EmPHAsis On Air when you’re driving, walking, resting, or if ...
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A domestic terrorist attack evokes a violent and oppressive response from the U.S. government... a labor dispute ends in violence... a young boy lies dying of a rare disease with no hope in sight. When the conflict focuses on a small town in West Virginia, Ken Murphy, Iraq veteran and Lieutenant Colonel in the West Virginia National Guard, must find a way to protect his family and community in a world turned upside down. In a future America terrifying to behold, Republic evokes the specter o ...
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A podcast for people with Axial Spondyloarthritis. I am Jayson Sacco, a 34 year plus Axial Spondyloarthritis survivor. With this show, I want to bring the AS community together and talk with doctors, organizations, and individuals all dealing with AS.
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This podcast is about the advancement of rare disease research told by health professionals, researchers, parents, and advocates. This podcast is for you to learn how newborn screening research saves the lives of babies every day through discoveries of new technologies and treatments. You will hear stories from experts who treat babies, the families who care for them, and the researchers who make it all happen.
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LAUNCHING SPRING 2024 --------------- Welcome to the dys-FUNCTIONAL podcast, where we discuss ways to function with Dysautonomia! Dysautonomia is an umbrella term for a bunch of different conditions that all cause your automatic body functions such as breathing, heart rate, blood pressure, digestion and so on to not work correctly. Here, we bring doctors, practitioners, caregivers, autonomic experts, and Dysautonomia warriors to the mic to discuss tips, strategies, the latest research, treat ...
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Freddi Greenmantle - Quiet Words from a Loud Mouth.
Freddi Greenmantle - Quiet Words from a Loud Mouth.
I am a 72 yr old, female, single parent, retired primary schoolteacher of more than thirty yrs experience. I have also taught abroad, (Caribbean island) and I still tutor ESOL. I am passionately committed to improving older people’s lives, having lived in a “sheltered/independent living” Housing Ass. retirement property for 13 years since becoming disabled through an accident in 2006. I have been working for 13 yrs in the local community as a local Whalley Range forum member, and secretary t ...
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CMT 4 Me is an emotional, heartfelt, and humorous podcast for the 3+ million people who have CMT (Charcot-Marie-Tooth disease), their friends, family, and the general public. CMT 4 Me provides a platform for people with CMT to have a voice, describe challenges, find ways to overcome those challenges, and share successes. Another goal is to spread CMT awareness and unite as a community. We will also cover research updates, fundraising, unique stories, interviews with the CMTA community, inclu ...
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Join me for podcasting fun! Want to know what I'm watching, listen to my Midnight Binges segment where I watch the newest shows. Looking for something new, look no further than our Under the Radar segment. Spotlight Artist places a light on artists regardless of the art they're into. Flashback Friday is just that, some nostalgia goodness. Is reading more your speed, we have a segment for that too. Our Currently Reading podcast might be your thing. Utter Randomness is just that, a segment abo ...
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What about PS? Hosted by Giselle Barbosa, PIP-UK Ambassador, Entrepreneur and Athlete. The What about PS? podcast aims to shine a light on Poland Syndrome, a rare disease, and the lived experience of the Poland Syndrome community. Each episode, Giselle will explore inclusive and varied experiences of people living with Poland Syndrome with a variety of guests, from Paralympian Kim Daybell, Former Cricketer Lewis Hatchett, Australian Gymnast Clay Mason Stephens to medical professionals, bra c ...
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"🎙️ Welcome to EMPOWER360 by PGDI - Amplifying Impactful Change! 🌍✨ We're excited to introduce our brand-new signature tune! 🎶 Join us on a journey of empowerment, transformation, and positive change. 🚀 In this captivating tune, we set the stage for thought-provoking discussions, inspiring stories, and engaging dialogues with change-makers from around the world. 🗣️💡 Our hosts, Theo Ekah and Isaac Salami, are here to take you on an incredible ride of knowledge, empowerment, and inspiration. 🎤 ...
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The Brain Coach podcast is hosted by executive function expert and 'Brain Coach' Mary Turos. Take a deep dive into executive functions and simple strategies based in neuroscience to overcome obstacles and achieve personal progress. Each episode provides insights from a community of educators, researchers, therapists, clinicians, family members to support a healthy brain.
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DNA Dialogues: Conversations in Genetic Counseling Research
Journal of Genetic Counseling (Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and DNA Today’s Kira Dineen)
In DNA Dialogues we dive into the intricate world of genetic counseling research. Join us as we peel back the layers of groundbreaking articles from the Journal of Genetic Counseling, bringing you exclusive discussions with the authors themselves. Each episode sparks a vibrant exchange, exploring the latest discoveries, ethical dilemmas, and technological advances that are shaping the future of medical genetics. From navigating complex testing decisions to building trust with diverse communi ...
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SciPodChat is an engaging podcast led by experienced Oncology scientist Dr Biswajit Podder that aims to uncover the mysteries of science in a digestible way for all ages, making complicated ideas friendly and pleasant. Listeners are taken on an enlightening journey exploring the wonders of the universe, the intricacies of the human body, and the cutting-edge technologies shaping our future through weekly episodes featuring conversations with experts from diverse fields, all while fostering a ...
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Pediatric Ethics Podcast is a monthly podcast from the Children’s Mercy Bioethics Center in Kansas City. This free podcast series for pediatric health care professionals features leading pediatric ethicists discussing timely topics in pediatric ethics.
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This podcast features people with chronic health conditions as they share their positive coping tools and practitioners of mind-body and/or alternative health who have helped people with a chronic health condition.
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At the University of Utah, we have a saying: Imagine, then do. On U Rising, you’ll hear stories from our faculty, staff and students that bring those words to life. We'll share inspiring, innovative and impactful initiatives that are benefitting our community and the world. U Rising is hosted by Chris Nelson and Julie Kiefer. Chris, who has more than 26 years of experience in higher education and academic health care, is the chief university relations officer and secretary to the university. ...
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Rethinking IgAN: A Different Perspective from Community Nephrologists : 4
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Luis Velez, MD is a board-certified community nephrologist in San Antonio, TX with expertise in hypertension and glomerular disorders. Jessica Coleman, MD is a board-certified community nephrologist practicing between Savanah, GA and Charleston, SC with expertise in hypertension and glomerular disorders. In this episode, Drs Velez and Coleman discu…
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Find Your Real Friends in Your Rare Disease Community
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Type 1 Diabetes (T1D) is not considered a rare disease according to the numbers. The T1D community is quite large and includes people of all ages, races, geography, and conditions. However, many of our guests use the technology developed for T1D patients. In fact, Brittany’s daughter Everleigh relies on the Dexcom G7 to manage her glucose levels. I…
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Electric power delivery makes this Croatian hypercar both stunningly fast and remarkably controllable.
Electric power delivery makes this Croatian hypercar both stunningly fast and remarkably controllable.
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For the first time ever, researchers have captured the worlds fastest backflipper showing off its talent in slow motion.
For the first time ever, researchers have captured the worlds fastest backflipper showing off its talent in slow motion.
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The same underlying technology powering massively popular generative AI models like from large tech firms like OpenAI is now being used to scan for early signs of lung disease.
The same underlying technology powering massively popular generative AI models like from large tech firms like OpenAI is now being used to scan for early signs of lung disease.
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When you think of productivity apps, you likely think of Microsoft Office.
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As the summer begins to wane, cases of mosquito-borne diseases are creeping up in some parts of the United States.
As the summer begins to wane, cases of mosquito-borne diseases are creeping up in some parts of the United States.
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Egyptologists have excavated a nearly 9,150-square-foot astronomical observatory in modern-day Tell el-Faraeen dating back to the sixth century BCEthe first and largest of its kind from that era.
Egyptologists have excavated a nearly 9,150-square-foot astronomical observatory in modern-day Tell el-Faraeen dating back to the sixth century BCEthe first and largest of its kind from that era.
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There are many forms of touch in the human vocabulary, like caresses, squeezes, slaps, and pinches.
There are many forms of touch in the human vocabulary, like caresses, squeezes, slaps, and pinches.
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Bugattis Chiron Super Sport was a revelation for the company in 2021.
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Labor Day Weekend marks the unofficial end of summer, and if you're sad to see the season go, you can find some solace in taking advantage of deep discounts on everything from a new mattress to premium ...
Labor Day Weekend marks the unofficial end of summer, and if you're sad to see the season go, you can find some solace in taking advantage of deep discounts on everything from a new mattress to premium Bluetooth speakers.
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They all lied to you.
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PKD and the Gift of Life, feat. Patient Advocate Valen Keefer
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In this episode of the podcast we speak to Valen Keefer, a professional speaker and patient advocate who was diagnosed with polycystic kidney disease (PKD) at age 10. Valen has faced a number of challenges in her journey, including a double organ transplant, and now inspires other PKD and chronic illness patients by sharing her story. Connect with …
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Sickle Talk: Running the Shores feat. Bianca Griffin
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September is National Sickle Cell Awareness Month. Welcome back to another episode, where we speak with our first guest, Bianca Griffin, President and Spokeswoman of the Jack and Jill Erie Shores Chapter. On September 8th, the Erie Shores Chapter and the American Sickle Cell Anemia Association will be holding a 5K Run/Walk, Running the Shores, wher…
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In the thorny acacia trees of the Kalahari Desert, avian construction crews are hard at work.
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After completing the first ever transatlantic airship flight in October 1928, the majestic Graf Zeppelin, a 776-foot gleaming dirigible, was greeted with fanfare wherever it flew; its lighter-than-air ...
After completing the first ever transatlantic airship flight in October 1928, the majestic Graf Zeppelin, a 776-foot gleaming dirigible, was greeted with fanfare wherever it flew; its lighter-than-air design captivated onlookers as it effortlessly circled city skylines.
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Your AirTag has already been outclassed.
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Ever wonder what makes Billy Joels piano playing so darn iconic?
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In the name of survival, starfish sever their own body parts to escape predators .
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One unknown day millions of years ago, a prehistoric manatee relative was attacked by a hungry crocodile .
One unknown day millions of years ago, a prehistoric manatee relative was attacked by a hungry crocodile .
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Chasing Glimmers - Whats Glimmering with Katie Lloyd
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ONCE UPON A GENE - EPISODE 241 Chasing Glimmers - What's Glimmering with Katie Lloyd Chasing Glimmers, is all about finding the small, hopeful moments that shine through the darkest of times. Like you, Katie and I know how challenging the rare disease journey can be, but we also believe in the incredible power of connection, bravery and positivity.…
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#7 Simulation and Leadership Development in Clinical Training for Genetic Counselors
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Guests include Megan Cho to discuss her paper, “Beyond multiple choice: Clinical simulation as a rigorous and inclusive method for assessing genetic counseling competencies” as well as Amanda Polanski and Ashley Kuhl to discuss their paper, “Leadership development in genetic counseling graduate programs.” In this episode we discuss clinical trainin…
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Whether youre facing a hurricane or tornado, a blizzard, or an earthquake, you may want what we call a weather radio to keep you and your family well-informed throughout the ordeal.
Whether youre facing a hurricane or tornado, a blizzard, or an earthquake, you may want what we call a weather radio to keep you and your family well-informed throughout the ordeal.
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Whats the weirdest thing you learned this week?
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Stop!
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The hard drive installed in your Windows or macOS system is where all of your apps and files liveso as computer components go, they don't get much more important.
The hard drive installed in your Windows or macOS system is where all of your apps and files liveso as computer components go, they don't get much more important.
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Classic sci-fi makes it seem like our first contact with aliens will be absolutely unmistakeable: a massive, unearthly spaceship landing on Earth with creatures that come out to greet us, or a message ...
Classic sci-fi makes it seem like our first contact with aliens will be absolutely unmistakeable: a massive, unearthly spaceship landing on Earth with creatures that come out to greet us, or a message that somehow we can readily and confidently translate.
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Tourists and workers alike jostling their way through New Yorks bustling midtown may notice an odd sight next time they look up.
Tourists and workers alike jostling their way through New Yorks bustling midtown may notice an odd sight next time they look up.
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Normally the animals that live at the deepest depths of the ocean can be be a little tough to look at.
Normally the animals that live at the deepest depths of the ocean can be be a little tough to look at.
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In New Hampshire, health officials announced the death of a 41-year-old man from a rare but deadly mosquito-borne illness called eastern equine encephalitis (EEE).
In New Hampshire, health officials announced the death of a 41-year-old man from a rare but deadly mosquito-borne illness called eastern equine encephalitis (EEE).
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136: An Interview With Susan Ward, PhD, Founder and Executive Director of the Collaborative Trajectory Analysis Project (cTAP)
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Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Susan Ward, PhD, founder and executive director of the Collaborative Trajectory Analysis Project (cTAP), which seeks to broaden patient eligibility for clinical trials in Duchenne muscular dystrophy.By Rare Care Podcast
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A Bold and Courageous Approach - Coming Together For A Cure
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Blake Benton’s earliest memories were his brother declining due to Duchenne Muscular Dystrophy. About 10 years later, his parents and brother made a bold move. They went to Costa Rica to get an experimental stem cell therapy. And it worked. Ryan was able to live until he was 37 years old with little degeneration caused by his DMD. He died in 2023 o…
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Party speakers may be the most misunderstood mainstream category in the audio world.
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The planets over 160,000 moth species are best known for their nighttime flights and being power pollinators .
The planets over 160,000 moth species are best known for their nighttime flights and being power pollinators .
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New research into the link between bee death and pesticides bolsters calls for alternative pest control methods.
New research into the link between bee death and pesticides bolsters calls for alternative pest control methods.
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Indigenous communities in South Americas western regions have ingested coca leaves for both medicinal and recreational purposes for thousands of years.
Indigenous communities in South Americas western regions have ingested coca leaves for both medicinal and recreational purposes for thousands of years.
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Most of the world became aware of the Event Horizon Telescope (EHT) project in 2019 with the publication of the first-ever image of a black hole: M87*, the supermassive black hole at the center of the ...
Most of the world became aware of the Event Horizon Telescope (EHT) project in 2019 with the publication of the first-ever image of a black hole: M87*, the supermassive black hole at the center of the galaxy Messier 87.
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Klipsch speakers have impressed the audio world since the company's inception in 1946, and the tradition of continually releasing innovative hardware has continued for the past 78 years.
Klipsch speakers have impressed the audio world since the company's inception in 1946, and the tradition of continually releasing innovative hardware has continued for the past 78 years.
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Every time it rains and every time you flush a toilet, all that water has to go somewhere.
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Is Microsoft Office overrated?
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After a thorough investigation into the matter, three researchers at the Technical University of Denmark believe they have determined which paper varieties are the most likely to induce a dreaded paper ...
After a thorough investigation into the matter, three researchers at the Technical University of Denmark believe they have determined which paper varieties are the most likely to induce a dreaded paper cut .
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In the quest to understand the universes many mysteries , astronomers are looking for potentially trillions of elusive space objects called rogue worlds.
In the quest to understand the universes many mysteries , astronomers are looking for potentially trillions of elusive space objects called rogue worlds.
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The Nintendo Switch has had an incredible run of blockbuster games since its release in March of 2017, and there's a good chance you haven't had the chance to play them all.
The Nintendo Switch has had an incredible run of blockbuster games since its release in March of 2017, and there's a good chance you haven't had the chance to play them all.
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[HIATUS] This Little Diagnostic Went To Market...
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On the show today, I'm thrilled to welcome – LIVE IN STUDIO — Liz Cormier-May, CEO of Mammogen, and Marty Keiser, CEO at IV Bioholdings. It's hard to blend funny, entertaining wit with healthcare jargon like diagnostics, market access, go-to-market strategy, etc. And yet, somehow, we did it. The process is gnarly and ridiculous, but now more than e…
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Police departments are often some of the tech industrys earliest adopters of new products like drones, facial recognition, predictive software, and now artificial intelligence .
Police departments are often some of the tech industrys earliest adopters of new products like drones, facial recognition, predictive software, and now artificial intelligence .
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Archeologists at the University of Iowa have revealed a first-ever find for the state: the regions first-ever scientifically recovered mastodon skull.
Archeologists at the University of Iowa have revealed a first-ever find for the state: the regions first-ever scientifically recovered mastodon skull.
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Apple's iPads are generally considered to be the best tablets around thanks to their power, versatility, large software library, and excellent battery life.
Apple's iPads are generally considered to be the best tablets around thanks to their power, versatility, large software library, and excellent battery life.
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Above 20,000 feet in the Himalayas, yaks are one of your only transportation options.
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A team of paleontologists recently found matching sets of Early Cretaceous dinosaur footprints on what are now two different continents.
A team of paleontologists recently found matching sets of Early Cretaceous dinosaur footprints on what are now two different continents.
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As much as we'd like to deny it, Americans have earned worldwide recognition for being bad travelers and unknowledgeable tourists.
As much as we'd like to deny it, Americans have earned worldwide recognition for being bad travelers and unknowledgeable tourists.
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