Rare 공개
[search 0]

Download the App!

show episodes
 
Casey + Cassandra are a pair of best friends with the same rare disease. Their goal is simple: sharing their lives to showcase the beauty and normalcy in disability, while having fun together. They’ll also touch on accessibility, friendships, style, and everything in between as they live their best, rare, lives! For show notes, go to rarewithflair.com/podcasts
 
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.
 
"Rare & Scratchy Rock 'N Roll" is a rockumentary podcast series that tells the greatest rock and roll stories on record. This includes the untold tales of some great hits that time forgot, but maybe you'll still remember. These programs are hosted by Radio Dave, a veteran disc jockey and published authority on rock and pop music history. He draws his "Rare & Scratchy Rock 'N Roll" stories from his "groove yard," an archive that has more music than most record libraries.
 
RareGem media features ten broadcast networks of positive programs and podcasts for business, lifestyle, inspiration, education, community, sports, youth, faith, health and entertainment. More at at www.oneraregem.com. Shows include #1 iTunes rated health podcast, The Model Health Show with Shawn Stevenson.
 
Podcasts to help business owners accelerate growth and sell their companies for maximum value. Episodes hosted by the team at RareBrain Capital, a leading M&A Advisory. Presenters explore all aspects of growing a business, tackling common performance problems, and selling a business for highest value.
 
Join editor in chief, web designer and activist Ella Audrey Rae and occasional guests for real, off the cuff conversations about (now laughable) life experiences and owning who you are regardless of your mistakes. With some of her favorite influential people discussing their own heartfelt and hilarious experiences and advice ...this is going to be GOOD! Get your snacks and join the chat. Support this podcast: https://anchor.fm/rcpod/support
 
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.
 
RAREFIED AIR is a music-driven podcast focusing on unique, vintage, and otherwise entertaining tracks culled from the archives of some of the film and television industry’s premiere production music libraries. The show primarily focuses on vintage production library music that was created for films and television programs from the 1960s, 1970s, and 1980s.
 
Peter Jordan and Bubba McComb are two comedians from Phoenix Arizona. They have unique and extremely different upbringings, yet somehow found friendship in the most peculiar of places. The Phoenix comedy scene. Listen to the stories, guests, and madness they create as the Rare Candy Podcast gets introduced to the world. They discuss family matters, cheese, illegal immigrants, love, psychedelics and MORE! If you like a little bit of a lot, you're going to love this one!
 
Dear warriors was created to help bring light to what has been in the shadows for many years; the rare disease community. This podcast will allow recipients/patients, family or anyone caring for someone with a rare disease an opportunity to tell their story. Our Goal is to help people living in this community feel less isolated, better informed and more engaged.
 
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 ...
 
Loading …
show series
 
This Monday we welcome to the Groove Studio's the fabulous vocalist Grammy nominated Jazz/Soul Songstress, Songwriter and producer Maysa. Early in her career she was the lead voice behind the group Incognito which led to work with many legendary artist as Stevie Wonder, Phil Perry, Gerald Veasley, Rick Braun, Will Downing, Kim Waters, Jason Miles' …
 
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…
 
Adam Lehrer (Safety Propaganda, System of Systems) joins Glen and Crypto to talk about the Substack model, CIA going woke, and Tom Morello. Adam Lehrer Safety Propaganda Substack https://safetypropaganda.substack.com/System of Systems Patreon https://www.patreon.com/systemofsystemsTwitter: @Safetypropagan1 @Glenrockney @Cryptopsi @Rarecandypod1…
 
The recruitment of patients for rare disease clinical trials can be challenging because of issues such as small patient populations and their geographic dispersity, but the failure to take a patient-centric approach in designing trial protocols can add to the difficulties sponsors face in conducting such studies. The Center for Rare Diseases at PRA…
 
CaptainRoBear, Paul (I_Love_Mundays), Reck (Reck1568), Riley (rileyhotsauce), Becca (BeccaGodsey) and Mudcat (MudcatTV) go back to school, and spend the session in Freshman Orientation! Gaming Community Expo '21 Tickets and Information: https://www.gcxevent.com/ Check out all our latest giveaways here! https://loot.raredrop.co/ Love Coffee? Check o…
 
hi hello hey, happy May! First, we hope you’re having a lovely spring no matter where you are. Even if you’re not for whatever reason, we hope our little show can be a bright spot in your day, or, in today’s case, make you think. Today, we explore disability representation in media. Growing up, we hardly had any disabled role models in media, much …
 
RARE & SCRATCHY ROCK 'N ROLL_134 – “THE LOST TOP 40 HITS OF 1977” This episode spotlights 40 lost hits from the year 1977. It was a vintage year for music, including some great records you never seem to hear on the radio, or the satellite or on anyone’s live stream anymore. Three of the songs on our playlist are title tunes from blockbuster Hollywo…
 
In this month's episode, the P4A team take a deep dive into the impact of Brexit on the UK's market access landscape. Four months after leaving the European Union, the UK's attractiveness as a key destination for commercialisation of new drugs is being tested. In order to improve its credentials, the UK is exploring a slew of measures that could po…
 
Gustavo Diaz Skoff grew up in the Startup Ecosystem in Puerto Rico. At 18 years of age, he founded the first youth-led non-profit organization for aspiring entrepreneurs in Puerto Rico with the support of 3 Government agencies. During his time at the #1 School For Entrepreneurship (Babson College), he studied and produced the only non-government co…
 
Jake, Josh, Michael, Izzee, and Evan have a short lesson about building culture in your world, and then after a well deserved rest continue their adventure! Gaming Community Expo '21 Tickets and Information: https://www.gcxevent.com/ Check out all our latest giveaways here! https://loot.raredrop.co/ Love Coffee? Check out Kings Coast Coffee Co.: ht…
 
We are joined by the Car Crash boys to talk about the Biden administration's ban on Menthol Cigarettes and flavored tobacco products. Later go through the Rap Conspiracy Iceberg from reddit and decide what's real and what's fake. Listen to Car Crash carcrash.libsyn.comRap Conspiracy Iceberg https://www.reddit.com/r/Infographics/comments/mvy08h/rap_…
 
The advent of genome editing is creating the potential to correct the underpinnings of genetic diseases by rewriting the mutations that cause them. Before these emerging technologies can be put to use to treat and cure genetic diseases broadly, a number of challenges must be overcome. These include such things as validating new gene editing technol…
 
CaptainRoBear, Paul (I_Love_Mundays), Reck (Reck1568), Riley (rileyhotsauce), Becca (BeccaGodsey) and Mudcat (MudcatTV) start over from zero, creating new characters, talking about their old campaign, and having a good time! Gaming Community Expo '21 Tickets and Information: https://www.gcxevent.com/ Check out all our latest giveaways here! https:/…
 
Alan is the co-founder and owner of Brands Of (alongside his brother). They were both studying abroad when they experienced the nostalgia many do when abroad. This was the beginning of their company, Brands Of, a startup company committed to exporting goods from Latin American countries and providing a drop shipping-plus-fulfillment service from Pu…
 
This week in the Groove studio we close out the month celebrating Jazz History Month with our esteem guest. Award-winning pianist, composer , author and speaker Kevin Toney. Musician, Composer, Arranger & Vocalist Johnny Britt . Saxophonist Composer & Arranger Azar Lawrence. Guitarist Composer Producer Craig T Cooper and contemporary jazz guitarist…
 
Jake, Josh, Michael, Izzee, and Evan have a short lesson on how to get your players to roleplay more, and then stop for a nice rest during an exhausting journey, cooking montage included! Gaming Community Expo '21 Tickets and Information: https://www.gcxevent.com/ Check out all our latest giveaways here! https://loot.raredrop.co/ Love Coffee? Check…
 
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…
 
PTC Therapeutics, through its partnership with the SMA Foundation and Genentech, won approval last year for Evrysdi, the first oral therapy for the rare neurodegenerative condition spinal muscular atrophy. Now, the SMA Foundation is working with the company to discover and develop regenerative treatments that can reverse the damage done by the dise…
 
My name is Perla Sofía Curbelo-Santiago (Sofía is my middle name, and Curbelo-Santiago are my parent´s last names). I was born and raised on the tropical island of Puerto Rico, a U.S. territory. I currently live on the Island. Since I was a kid, I was always interested in flowers and plants. I used to have my own garden lot in my parent´s backyard.…
 
This week welcome to the Groove studio celebrating Jazz History Month we welcome to the Groove Studio. 8 time Grammy nominated Jazz Saxophonist Gerald Albright. Join us for an evening of great music and conversation. Tune in www.ubngo.com channel 1 Facebook, YouTube, and twitter live 8pm pst. Like us on Facebook subscribe to our you tube channel. C…
 
hi hello hey, we have the answer to your burning question: what CAN we see?? We get this question all the time when we’re getting to know people. It’s difficult to explain when we don’t know anything beyond the vision we have since blindness is truly a spectrum. To answer this monolithic question, we decide to talk about the things our eyes do well…
 
Crypto and Glen are joined by Dr. Jonathan Latham to discuss Bill Gates, Covid orgin, Possible Lab Escape, and The Left being the "Party of Science". Here are the articles we discussed in the episode https://www.independentsciencenews.org/commentaries/agricultures-greatest-myth/https://www.independentsciencenews.org/commentaries/a-proposed-origin-f…
 
Chandler Crews was born with the rare, genetic condition achondroplasia, the most common form of dwarfism. In 2010, she decided to undergo a series of limb lengthening surgeries, which over a four-year period increased her height to 4’ 11” from 3’ 10.” We spoke to Crews, founder and president of the nonprofit patient organization The Chandler Proje…
 
RARE & SCRATCHY ROCK 'N ROLL – “HIT SINGLES COVER VERSIONS OF BEATLES ORIGINALS – PART 2” Although they were only active for a little over a decade – from 1960 to 1970, the Beatles remain to this very day the most covered band in rock and roll history. By covers, we mean new versions of their originals recorded by other artists. There are thousands…
 
Lincy Ayala is Co-Founder and CEO of BookSloth. Lincy began her career as a biologist, whose love for animals had her working at a Nonprofit Wildlife preserve. Soon after, she re-discovered her passion for design when preparing graphics for the wildlife enclosures. From there she became a freelance developer/designer and has worked with multiple co…
 
Jake, Josh, Michael, Izzee, and Evan talk about meta-gaming and how to avoid it, and then escape the underdark only to be lost in the wilderness! Gaming Community Expo '21 Tickets and Information: https://www.gcxevent.com/ Check out all our latest giveaways here! https://loot.raredrop.co/ Love Coffee? Check out Kings Coast Coffee Co.: https://kings…
 
Crypto and Glen talk about the mass vaccination attempt in the US, ACTUAL Covid deaths, Assisted Su*c*de and more. Make sure to buy our merch collaborations with Grift/Shop at his store. Merch is limited and will be available until Friday 4/16/21 https://grift.shop/collections/the-pop-up-shopTwitter: @cryptopsi @glenrockney @rarecandypod1…
 
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…
 
Children’s Mercy Research Institute has been expanding its efforts to understand the genetics underlying rare diseases. Earlier this year, it opened a new home in downtown Kansas City and at the end of last year launched Genomic Answers for Kids, a first of its kind pediatric data repository and the institutes flagship research initiative. We spoke…
 
CaptainRoBear, Paul (I_Love_Mundays), Reck (Reck1568), Riley (rileyhotsauce), Becca (BeccaGodsey) and Mudcat (MudcatTV) finish out the Godwin Games, and are suddenly attacked by a swarm of Valkyries! Gaming Community Expo '21 Tickets and Information: https://www.gcxevent.com/ Check out all our latest giveaways here! https://loot.raredrop.co/ Love C…
 
Fabián Vélez Vicente, also known as “Favo”, is a Puerto Rican tech serial entrepreneur and full stack developer that is currently the President and CEO at Link Puerto Rico, a Puerto Rican organization that aims to facilitate world-class and accessible experiential education and initiatives in technology and entrepreneurship related fields, Chief Te…
 
hi hello hey, and hope had a happy Easter if you celebrated it! After last week’s ~controversial~ episode, we wanted to have a little fun and let our listeners get to know us a bit better! Even though you may feel like we’re already friends, it’s hard to get to know a host when you can’t interact with them. This week, we’re talking personalities an…
 
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.…
 
Gene therapy is promising to provide treatments and potential cures for a long list of rare, genetic diseases. A key element of these therapies are the viral vectors that are used to deliver and insert the genetic material used to treat a patient. Guangping Gao, co-director of the Li Weibo Institute for Rare Diseases Research, director of the Horae…
 
RARE & SCRATCHY ROCK 'N ROLL_132 – “HIT SINGLES COVER VERSION OF BEATLES ORIGINALS – PART 1” Although they were only active for a little over a decade – from 1960 to 1970, the Beatles remain to this very day the most covered band in rock and roll history. By covers, we mean new versions of their originals recorded by other artists. There are thousa…
 
The world of orphan drugs is at the cusp of a transformation in the post COVID era. In this episode, the team discuss the impact of the pandemic on value demonstration of orphan drugs. In order to be successful, manufacturers of precision medicine will need to focus on carving out a niche for their drugs and support health systems to find the right…
 
CaptainRoBear, Paul (I_Love_Mundays), Reck (Reck1568), Riley (rileyhotsauce), Becca (BeccaGodsey) and Mudcat (MudcatTV) participate in perhaps their greatest challenge yet, The Godwin Games! Gaming Community Expo '21 Tickets and Information: https://www.gcxevent.com/ Check out all our latest giveaways here! https://loot.raredrop.co/ Love Coffee? Ch…
 
This week welcome to the Groove studio Three time GRAMMY® Award-winning drummer, producer, educator, activist and 2019 Doris Duke Award recipient Ms. Terri Lyne Carrington. She is the first woman ever to win in the Best Jazz Instrumental Album category in 2013 for Money Jungle: Provocative To date Ms. Carrington has performed on over 100 recordings…
 
Dan Elitzer, founder of the MIT Bitcoin Club and Nascent, gives us a guided tour of the world of DeFi and NFTs—how do we build DeFi-first, with more personal economic systems; when should or shouldn’t we lean into the financialization of everything; the power of protocol defaults & consciously-applied friction; the distribution of scarce resources;…
 
Jake, Josh, Michael, Izzee, and Evan discuss roleplay and how characters change, and then jump right back into their battle with the Hive Queen! Gaming Community Expo '21 Tickets and Information: https://www.gcxevent.com/ Check out all our latest giveaways here! https://loot.raredrop.co/ Love Coffee? Check out Kings Coast Coffee Co.: https://kingsc…
 
It began with a deep sea cod. David Carter and Jeff Hansen are people who have the courage of their convictions. What’s surprising about their alliance is that at first glance one might struggle to see HOW their convictions are aligned. David Carter is CEO of Austral Fisheries. He’s spent 42 years with the company, working from the ground up as a g…
 
Sanath Kumar Ramesh’s son Raghav was born with an ultra-rare and progressive disorder known as SSMD. The condition is caused by mutations in the GPX4 gene. There are only a handful of known patients with GPX4 mutations. In the past, most known cases resulted in death about a month after birth. Ramesh has moved with remarkable speed to find patients…
 
Loading …

빠른 참조 가이드

Google login Twitter login Classic login