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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.
 
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 ...
 
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CoRDS Cast

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CoRDS Cast

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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.
 
TGen Talks explores the human genome to tackle the latest science and discoveries in cancer, neurological disorders, rare diseases, metabolic disorders and infectious disease. Learn about causes and potential cures in our monthly podcast!
 
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NORDpod

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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®), 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.
 
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.
 
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PSC Mami

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PSC Mami

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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.
 
A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every week. 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 early ...
 
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show series
 
In this episode, the P4A team discussed the impact of cost-containment measures in Germany, the European Commission's recent move to revise legislation on orphan medicinal products and potential legislative reforms in the US under the new Biden administration. Presenter: Jens Leutloff Contributors: Chloe Sheppard, Max Rex Producer: Aparna Krishnan…
 
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.…
 
Thank you for joining us through our journey in season 1. We hope you enjoyed the show. Special Thanks to our guests, the DW team, and the rare disease community. We look forward to season 2 where we will share more stories and so much more. If you would like to join us on Dear warriors please write to us at mystory@dearwarriors.com. See you soon…
 
At TGen's Center for Rare Childhood Disorders, we are committed to developing, refining, and applying the latest tools of genomic medicine to help diagnose and direct treatment for children with rare diseases and disorders.Did you know that there are over 7,000 rare diseases that affect over 25 million Americans? Many of these patients endure a dia…
 
hi hello hey, and let’s take a peek at this week’s episode! This week, we thought it would be fun to play off the “what’s in my bag?” YouTube video style in our very Rare with Flair way. While we’ve talked about our various chronic illnesses before, we took a more serious angle during episode 6. This time, we wanted to really have fun with it and s…
 
At TGen's Center for Rare Childhood Disorders, we are committed to developing, refining, and applying the latest tools of genomic medicine to help diagnose and direct treatment of children with rare disorders.Did you know that there are over 7,000 rare diseases and that they affect over 25 million Americans many of these patients are on a diagnosti…
 
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…
 
hi hello hey, welcome to the season of looooove. Full disclosure: back in early August 2020 when we had just started this beautiful little pod, we had the idea to do an episode about dating… and were dreading it ever since lol. The idea seemed daunting and a little personal, but now that it’s recorded and released, we’re so happy we made it. Dating…
 
In this episode of CoRDS Cast, Alyssa interviews David Longman from the Tango2 Research Foundation, and Dr. Michael Sacher, who is a professor in the biology department at Concordia University. TANGO2 itself is a protein coding gene on chromosome 22 (22q11.21). TANGO2 has only recently been identified as a gene that contributes to human disease so …
 
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…
 
In this Rare Disease Day special episode, we focus on the impact of COVID -19 on rare disease patients. Some of the key challenges for patients during this pandemic include disruption in their access to treatments, struggle to continue participation in clinical trials, lack of access to vital equipment such as PPE (Personal Protective Equipment) an…
 
Rachel Sutherland, an editor and copywriter with our partners at Snow Companies, shares her cystic fibrosis story. She discusses diagnosis and the importance of establishing a support system.โดย waithowdoyouspellthatraredisease
 
It took under a year to develop, test and begin to deploy vaccines against COVID-19. And despite a few hiccups upon arrival, the rollout is underway... and that's great news for a world that's nearing 100 million cases and over 2 million deaths. Joining TGen Talks to discuss his take on COVID-19 vaccines is Dr. David Engelthaler, Director of TGen N…
 
hi hello hey, it’s a Tuesday! Here at Rare with Flair, we are passionate about lots of things: disability advocacy, style, and music, to name a few you already know. However, this week, we’re delving into our babies, our dogs! Since Cass has a guide dog and Case has a lovely lil pet dog, we wanted to compare and contrast our experiences with our do…
 
Are you #phaware? EVERYBODY HAS A STORY. WHAT'S YOURS? phaware® wants to share your pulmonary hypertension story with our engaged global audience. Whether you are a patient, caregiver, or medical professional, we are enlisting PH community members from across the globe. We can record anyone... from anywhere... anytime. Contact us at: www.phawarepod…
 
hi hello hey, and happy new year! We hope you had an excellent and safe new year and are as thrilled as we were to put 2020 behind us. Since the new year is usually a time people feel motivated to try new things (#NewYearNewMe), we thought this would be a fun time to talk about what hobbies we’ve tried in the past and what our pastimes are now. We …
 
Winter is here & so are the "winter blues"! Seasonal Affective Disorder is REAL and is caused by decreased serotonin levels in the brain during the winter months. ADD Covid on top of that and we have some pretty dark months ahead of us. Listen to Nurse Melissa discuss the patho behind what's going on in the brain during these times and what we can …
 
Alcoholism is one of the most dangerous diseases of the mind and body. It is impossible to cure and it shatters many lives! Alcohol is the most DEADLY and LEGAL drug there is! Join The Masked Nurse for Part 1 of a 2 part episode about the psychological and physiological devastation of alcoholism!โดย Nurse Melissa
 
In this episode of CoRDS Cast, Polly sits down with Tabitha Frank, who is the founder of the Endosalpingiosis Foundation, Inc. After Tabitha was told that she had endometriosis and would never be able to have a child, she got pregnant with her son. Complications started to arise after her pregnancy and she would soon be diagnosed with endosalpingio…
 
hi hello hey, and happy new year! 2020 has been a difficult year for everyone, but we still wanted to look back on it and the ways we’ve grown. We also wanted to mention what we’re looking forward to in 2021 and get excited about little things like seeing friends, sitting in cafes, or most of all, getting the vaccine! Despite this year being how it…
 
Dr. Raymond Benza is the Director for the Division of Cardiovascular Medicine at “THE” Ohio State University. He has been in practice for more than 20 years. In this episode, Dr. Benza discusses GossamerBio’s GB002 Phase 2 Study and explains what differentiates GB002 from other investigational drugs in development. Learn more about pulmonary hypert…
 
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…
 
Rosalind Marshall-Jones is an innovative speaker with more than 15 years of experience in the caregiving industry. She is a seasoned health care provider, who runs Jacksonville’s Best Caregivers, an organization that provides short and long-term health care. In this episode, Roz discusses the impact #covid19 has had on home healthcare from anxiety,…
 
In this episode, the P4A team review all the key events of the year 2020 in the orphan drug, cell and gene therapy world. The emergence of COVID-19 pandemic has caused disruption but also opportunities for the biotech industry. From change in regulations, new stakeholder collaborations to impact of Brexit and US drug pricing reforms, a full round u…
 
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 …
 
Internships provide students an opportunity to learn more about potential career choices and equally important, following the experience, gauge whether that career is right for them. Joining TGen Talks is Josh Niska, MD — a 2007 Helios Scholar at TGen — who explains the value of his Helios internship experience, how it helped shape his career, and …
 
hi hello hey, and happy holidays! We’ve been so excited to make this episode since we had the idea back in August and we can’t believe it’s finally here! Here at Rare with Flair we celebrate Christmas and love this festive season, so what better way to celebrate than with a holiday special? So, grab a cup of hot cocoa, ,cozy up in your comfy clothe…
 
David F. Harris founded Insight & Measurement and provides research, training and speaking to the industry. In this episode, he discusses the qualitative and quantitative work that he conducts with PAH patients, so that people who get invited to be part of these types of studies have some understanding of what actually the process is like and what …
 
SPECIAL EDITION: The Pathways To Treatment The PAH Initiative and United Therapeutics are excited to bring you the PAH Today National Broadcast Series. This series of virtual events is intended for adult patients with pulmonary arterial hypertension (PAH) and their caregivers. Advancements in the care and treatment of PAH are improving the lives of…
 
PAH patient Sarah Sizemore discusses being diagnosed with pulmonary hypertension at a young age in Denver, her family's decision to move from altitude and how positivity helps her face this disease. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @ph…
 
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 this episode of CoRDS Cast, Alyssa sits down with Kristen Groseclose and Dr. Carlos Prada with the Smith-Kingsmore Syndrome Foundation. Smith-Kingsmore Syndrome is a rare condition which is caused by mutations in the MTOR gene (mechanistic target of rapamycin), found at chromosome location 1p36. Kristen is the president of the Smith-Kingsmore Sy…
 
SPECIAL EDITION: How Decisions Today Can Shape the Future The PAH Initiative and United Therapeutics are excited to bring you the PAH Today National Broadcast Series. This series of virtual events is intended for adult patients with pulmonary arterial hypertension (PAH) and their caregivers. Advancements in the care and treatment of PAH are improvi…
 
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…
 
hi hello hey! This episode is a little different, and by different we mean smaller, than our usual episodes. Even so, we think it’s “small but mighty” in that we packed a lot of content in a short amount of time! Part of the reason we made a mini is because when we recorded last week, it was also the week of Thanksgiving in the U.S., so we wanted t…
 
Krosby Myers is a registered Nurse at UC San Diego Health System. Though she works in their surgical oncology unit, Krosby had no idea that UCSD was a leading pulmonary hypertension center, until she was diagnosed with PH in her 37th week of pregnancy. In this episode she discusses her journey to diagnosis and how her nursing perspective changed in…
 
Hear from the experts in our conversations on CHARGE Syndrome (CHD7). We cover CHARGE Syndrome diagnosis, new treatment options, and how to connect with the CHARGE Syndrome community. Experts in this episode include: *Meg Hefner, MS: Genetic counselor at Saint Louis University School of Medicine, and special advisor for the CHARGE Syndrome Foundati…
 
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