Rare Disease 공개
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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 ...
 
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.
 
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.
 
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.
 
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.
 
Lori Rohlinger is a former pastor's wife who has endured losing her husband to a rare disease but still remains positive that God has a plan for her widowed life. In her podcast, Lori shares her real life experiences from grief to joy and all the in-between. She is a single parent raising four children and learning what it looks like to move forward without the love of her life. Lori loves to share how good and faithful God has been to her, even in the midst of her Beautifully Broken life.
 
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.
 
Affecting less than 200,000 people in the US each year, sickle cell disease (SCD) remains a rare but painful and often misunderstood illness. Patients suffering from SCD often fly under the radar for critical early-stage diagnosis, which can lead to future complications and poor outcomes. This series seeks to bridge the gap in SCD education for healthcare providers on the frontlines of emergency medicine to improve patient care. Hear from experts in the field as they discuss common misconcep ...
 
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show series
 
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…
 
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 …
 
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…
 
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…
 
Hear from the experts in our conversations on a rare genetic disorder: Neurofibromatosis type 2 (NF2). We cover NF2 diagnosis, new treatment options, and how to connect with the NF2 community. Experts in this episode include: *Oliver Adunka, MD, FACS: Director of Otology, Neurotology and Cranial Base Surgery, Department of Otolaryngology, Head and …
 
Sometimes, being thankful can be tough. Especially in 2020! But when I find that I am having trouble being thankful, I simply remember a few of my favorite things, and a few of my favorite scriptures, and then I don't feel so bad:) Stay till the end for a great pumpkin chocolate chip recipe!저자 Lori Rohlinger
 
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 …
 
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…
 
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…
 
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 …
 
In this episode, Ilana and Rebekah talk with Darlene Shelton, the founder of Danny's Dose. It's a nonprofit dedicated to changing emergency medical protocols for chronic illness and rare disease patients. This conversation was recorded at the NIH Rare Disease Day in Februrary, 2020 -- the last in our series of conversations with patients on the fro…
 
Hear from the experts in our conversations on an extremely rare genetic disorder: Hermansky-Pudlak Syndrome. We cover HPS diagnosis, new HPS treatment options, and how to connect with the HPS community. Experts in this episode include: *Lauren Giannetti Sferrazza MS, LGC - Certified and Licensed Genetic Counselor at Myriad Genetics. *Donna Appell, …
 
Dear Warriors is created to give a voice to 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 from the community to be better informed and more engaged.저자 Allie Brown, Amy Vega
 
In this episode, Sunni talks with illustrator J.G. Jones, who has worked as a comic book artist for almost 25 years. Jones, who was diagnosed with a type of rare blood cancer, is working on a new project that is bringing attention to myeloproliferative neoplasm patients through a combination of story and illustration.…
 
Of course God loves us. It says it over and over again in scripture. But have you ever wondered if maybe God didn't like you? Maybe you feel like God has favorites and you aren't one of them. I have struggled with that feeling! Let me tell you about what I found out about God's character and His feelings towards us!…
 
Do you need a little motivation? Inspiration? On this episode of the Rare Perspectives podcast, we certainly felt both motivated and inspired after speaking with returning guest Jordan Martin, Hemophilia B patient, personal trainer, state champion wrestler, and inspirational voice in the chronic disease community. Tune in for some words of wisdom f…
 
As we kick off a new season of Rare Perspectives, listen to our conversation with Terry Staletovich, attorney for ACCESS, PSI’s legal program that helps and represents chronically ill patients in the complex field of healthcare and insurance. In this episode, we dive into disability help and SSDI assistance, COVID’s effect on the legal process, pat…
 
In this episode, Ilana has a conversation with Jansen's Foundation president and founder Neena Nizar. Jansen's Disease is one one of the rarest disorders in the world, with Neena reporting only 10 known cases worldwide when she started her foundation in 2017. This interview was recorded in February 2020 at NIH Rare Disease Day. Since then, Neena re…
 
Punch your E ticket for this one!! It's getting exciting as we look at what the Bible says about the rapture of the Church. Are we living in a way that when Jesus comes back, we won't have to explain ourselves? Buckle up as Greg Rohlinger speaks about the end of the world as we know it.저자 Lori Rohlinger
 
Hear from the experts in our conversations on a rare genetic disorder: TANGO2-related metabolic encephalopathy and arrhythmias. We cover TANGO2 Disease diagnosis, new treatment options, and how to connect with the TANGO2 Disease community. Experts in this episode include: *Seema Lalani, MD - Clinical geneticist at Texas Children's Hospital, and pro…
 
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