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Rare with Flair

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Rare with Flair

Casey Greer & Cassandra Mendez

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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 learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.
 
I want to share information about living with and dealing with a chronic or invisible disease. This is made even more difficult if the disease is rare. I'll share my story and also invite some guests to share their viewpoints and experiences. There are hundreds of different types of diseases out there that are invisible and can the sufferer feel more alone. I'm hoping to help the patient, families and other support systems better communicate and empathize with each other. ***Disclaimer - Thi ...
 
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 ...
 
Come listen while two spoonies talk about True Crime! From malpractice to the most gruesome true crime cases - we cover the curious, the dark, and the bizarre. We started as a podcast focused on exposing the malpractice cases that changed our medical system forever. Recently we have branched out and have added subjects like rare diseases, medical history, serial killers who prey on the vulnerable, Munchausen by Proxy cases, diagnosis stories, interesting health remedies, self-help book revie ...
 
The Video Journal of Hematological Oncology (VJHemOnc) podcast covers the latest hematological oncology and hematology news from international experts – from leukemias, lymphomas, MDS and MPNs, to sickle cell, aplastic anemia and rare diseases. Made for healthcare professionals and researchers, we are a global, independent, open-access platform. Listen to the latest news, including cutting-edge trial updates, controversies and opinion. If you enjoy the podcast, please leave us a rating and r ...
 
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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Two Rare Mama Bears

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Two Rare Mama Bears

Cure CMD (Matty Manley & Megan Meyer)

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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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Rare Perspectives

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Rare Perspectives

Patient Services Incorporated

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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.
 
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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Part 2 of our series on addressing healthcare disparities: We will review what baselines are and how they can impact clinical trials, as well as begin to discuss why it is important that clinical trials include people of all backgrounds. Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: S…
 
In this episode P4A’s Senior Client Relationship Director, Bruce Chin discusses his experiences from the in person World Orphan Drug Congress USA 2021. Topics of discussion included travel and safety precautions due to COVID, Bruce’s favourite sessions, key learnings from the sessions, and much more! Presenter: Georgie Rack Contributor: Bruce Chin …
 
In this episode, we discuss narcolepsy and the results of a recent clinical trial investigating FT218 for efficacy in treating excessive daytime sleepiness and cataplexy. Dr. Asim Roy, the medical director of the Ohio Sleep Medicine Institute and a lead investigator in the REST-ON study, joins us.To learn more about FT218 and the clinical trials, v…
 
hi hello hey, and what a special week we have for you! Yes, you read correctly: we were finally reunited after two and a half years! It was magical, and not just because we were at The Most Magical Place on Earth! Getting to hug again was so special, and we had to share our time with you all, while also touching on disability-related things about h…
 
In lieu of recent events, Ryah and Jauclyn start a new segment: Conspiracy Theories. In this episode Ryah talks with Jauclyn about all of the people that go missing in National Forests every year and what could be behind these missing persons cases. *Disclaimer: We joke in our podcasts, but it NEVER takes away the seriousness of these tragedies* Wa…
 
In this episode Ryah and Jauclyn read some of Dr. Death's uncovered messages on the Texas Observer after his malpractice cases came to light. Let us know on Instagram if you'd like us to read more! Social Media: Tiktok: jauclyns/ryahpabon Instagram: ChronicallyIconicMistakes Sources: https://imgur.com/a/ImfmefS…
 
Over the last two decades the outcomes of patients with amyloidosis have substantially improved with timely diagnosis, the use of chemotherapeutic agents and improved patient selection for autologous stem cell transplantation (ASCT); however, for patients who are diagnosed at later stages or who are ineligible for ASCT the prognosis is poorer. Rece…
 
hi hello hey, we got a spicy one this week! Cass and Case with their mobility tools, 2020/2021 show notes Casey mentions the Our Generation blind doll! Check it out! Cassandra references our how we see episode which gives some context to how we can see Casey mentions our representation in media episode…
 
Currently, five chimeric antigen receptor T-cell (CAR-T) therapies are approved for the treatment of hematological malignancies including acute lymphoblastic leukemia, B-cell lymphoma, non-Hodgkin lymphoma and multiple myeloma. Despite reporting high response rates, the use of CAR-T therapy is associated with a number of practical challenges, inclu…
 
We talk about the active and open investigation of Kylen Schulte and Crystal Turner who were brutally murdered in Utah just months ago. We also talk about how it could connect with the Gabby Petito case. Social Media: Tiktok: jauclyns/ryahpabon Instagram: Chronicallyiconicmistakes Sources: Go Fund Me for Sean-Paul: Fundraiser for Sean-Paul Schulte …
 
The treatment of chronic myeloid leukemia (CML) has substantially evolved since the FDA approval of the tyrosine kinase inhibitor imatinib in 2001 - the first targeted therapy for CML. Since then, several second- and third- generation TKIs have emerged in the field, as well as other novel therapies. Despite this, around 20-30% of patients with CML …
 
Continuous therapy has been a key aspect of the standard of care approaches for the treatment of multiple myeloma for many years, prolonging disease control and improving progression-free survival in comparison to fixed-duration approaches; however, it is now being discussed whether treatment-free interval strategies could be incorporated into the …
 
The management of chronic lymphocytic leukemia (CLL) has evolved drastically over the last few years, with the introduction of novel therapies and the identification of new genetic markers. The current most effective therapies for CLL include venetoclax, obinutuzumab and BTK inhibitors, whilst ongoing clinical trials are investigating the use of BT…
 
This episode will begin the series on address healthcare disparities and accessibility. This will be a multi-part series as there is a wealth of items that need to be addressed, and in this case, wealth is not good. This episode will review key points and information for understanding what the next episodes hold and why addressing these now is not …
 
We share what we know so far on the Gabby Petito case (Keep in mind that this was recorded this week, new information is currently coming out so may not be completely up to date). Gabby Petito was a known social media influencer, as well as a very beloved daughter. We can tell she'll be truly missed. Update: Brian Laundrie is now wanted on a federa…
 
In this episode, we discuss a condition called periodic paralysis with Dr. Steve Cannon, professor and chairman of the department of physiology at the David Geffen School of Medicine at UCLA and medical advisor with the Periodic Paralysis Association. Periodic Paralysis is a rare genetic disorder that is characterized by attacks of paralysis, weakn…
 
We cover the story of Gabby Petito, Social Media Influencer, who was reported missing in September 2021 - her fiancé Brian Laundrie, being the main suspect. *This story is still developing, so come back for updates. * Update 9/21/2021: As of today around 5pm - the body found yesterday has been confirmed Gabby Petito, ruled as a homicide, cause of d…
 
hi hello hey, HAPPY FALL! If you’re a longtime listener, you know how much we love fall. We’re definitely *those* girls, but we wouldn’t change it for anything. Although it’s not quite fall yet, we thought we’d ring in the season with a fall special! We talk about all our fall favorites and make a quick pit-stop to talk about the disability aspect …
 
Measurable residual disease (MRD) is emerging as an important prognostic marker in the management of multiple myeloma. Promising clinical evidence from trials, such as the MYELOMA XI trial, has linked MRD-negativity to improved outcomes in myeloma. Whilst research into MRD as a prognostic marker continues, MRD is further being explored as a tool to…
 
Autologous stem cell transplantation (ASCT) has been the standard of care patients with multiple myeloma for the past three decades; however, high-risk patients still have poor outcomes. Many bispecific antibody therapies are currently under investigation for the treatment of myeloma, such as blinatumomab, teclistamab, talquetamab and cevostamab, a…
 
Come join us as we talk about the mysterious H.H. Holmes - the first American serial killer who would lure unsuspecting victims into his Chicago torture mansion. Tiktok: Jauclyns/ryahpabon Sources: https://www.crimemuseum.org/crime-library/serial-killers/hh-holmes/Jauclyn & Ryah による
 
Part 2. We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year. This episode will concentrate on keeping our kids healthy Contact: Email: Seetheinvisible2020@gmail.com Twitter: R…
 
Part 2. We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year. This episode will concentrate on transportation tips. Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda…
 
Antibody therapies are rapidly transforming the treatment landscape of non-Hodgkin lymphoma (NHL). Since the development of rituximab as an anti-CD20 antibody, there has been an intense research interest in antibody-based therapeutic approaches. The use of antibody-drug conjugates, monoclonal antibodies, and bispecific antibodies are increasingly b…
 
A significant number of patients with acute myeloid leukemia (AML) are unable to withstand intensive chemotherapy regimens due to older age and the presence of comorbidities, creating an unmet medical need. Recent advances in the understanding of the genomics underlying AML have led to the development of therapies targeting FLT3, IDH1/2 and BCL-2. …
 
hi hello hey, it’s officially SEPTEMBER! Cass + Case enjoying coffee + tea, 2021/2020 show notes Cassandra references our fashion episode and our hobbies episode where she mentions her Marie Kondo journey in our small talk at the beginning Casey shares the title of the book, “The Life-Changing Magic of Tidying Up” by Marie Kondo and the Libby app w…
 
We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year. This episode will concentrate on keeping our kids healthy Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F J…
 
We are exploring back to school safety tips - even though some of the tips don’t necessarily apply to illnesses, they are good reminders on what we need to be aware of as our most precious resources begin another academic year. This episode will concentrate on transportation tips. Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jeffe…
 
Janus kinase (JAK) inhibitors are becoming an increasingly prominent class of drug in the treatment of myeloproliferative neoplasms (MPNs), in particular for the management of myelofibrosis symptoms. With the FDA approval of ruxolitinib in 2011 followed by the approval of fedratinib in 2019, JAK inhibitors are already established in the myelofibros…
 
Great progress has been made in the treatment of acute lymphocytic leukemia (ALL), primarily owing to the development of targeted therapies such as monoclonal antibodies and tyrosine kinase inhibitors. The use of targeted therapies has significantly improved survival outcomes for patients with ALL and has become a mainstay of frontline treatment. S…
 
This week, we speak with Mike Graglia from the SYNGAP Research Fund about their efforts in advocating for this underdiagnosed genetic condition. Find out more about SYNGAP and the SRF at SyngapResearchFund.org.Patient Worthy による
 
In this episode we explore the story of Christopher Duntsch - also known as Dr. Death, who performed SPINE surgeries on patients, disabling a lot of them for life. Tiktok: jauclyns/ryahpabon Sources: How conservative changes caused him to fly under the radar: https://www.texasobserver.org/anatomy-tragedy/ Timeline: https://www.ranker.com/list/chris…
 
This episode is completely about my experiences and thoughts as my children get ready to start the new school yeat with a new Variant, Delta,, of Covid 19 starting to surge. Contact: Email: Seetheinvisible2020@gmail.com Twitter: Ronda F Jefferson (@CInvisible2020) / Twitter Facebook: SeetheInvisible2020 | Facebook Instagram: Ronda Jefferson (@seeth…
 
Many clinical trials are currently investigating the potential benefits of interferons in the treatment of myeloproliferative neoplasms (MPNs), in particular for polycythemia vera, essential thrombocythemia and myelofibrosis. Interferon-alfa was originally explored for MPN treatment many years ago, however it’s frequent dosing and toxicity profile …
 
Real-world data gained through scientific studies is essential in the advancement of treatments for all hematologic malignancies. Historically, pharmaceutical companies have been restricted to randomized clinical trials as their only form of testing a treatment. However, due to technological advancement, there are now ways in which data from real-w…
 
Part 2 of Serial Killer & Rapist - Samuel Little, who preyed on disabled women. In this part Jauclyn talks about some of Samuel Little's victims that have not been found. Tiktok: Jaucylns/ryahpabon Samuel Little Portraits Of Potential Victims Released By FBi | Crime News (oxygen.com) A Timeline Of Samuel Little's Serial Killer Confessions | Crime N…
 
hi hello hey! As always, we’re so happy you’ve joined us this week. We thought it would be lots of fun to spend this time talking about our older (non-disabled) siblings! For both of us growing up the youngest, having our older sibling was everything to us: they showed us good music, they played with us, and they grew to be one of our favorite frie…
 
Today I am reviewing some events that have happened to those with allergies and/or asthma while flying. This topic is very concerning to me as I have worried about what will happen if I need to fly, but an animal that I am allergic to is on the plane? And for clarity, I’m not referring to Service Animals but to pets. This topic can create hardships…
 
Over the past two decades the treatment landscape for non-Hodgkin lymphoma (NHL) has rapidly evolved, with the development of Bruton’s tyrosine kinase (BTK) inhibitors making a particularly significant impact and opening the door to the possibility of chemotherapy-free regimens. In 2013, ibrutinib became the first BTK inhibitor to receive FDA appro…
 
Research into the treatment of non-Hodgkin lymphoma (NHL) has made great progress within the last decade, with clinical trials such as the TRANSCEND-OUTREACH-007 and ZUMA-12 studies successfully advancing into later phases. Although there are currently various approaches to NHL treatment, primarily employing chemotherapy, steroid medication and all…
 
This episode is a two part episode of prolific serial rapist Samuel Little, who preyed on disabled and vulnerable women. Samuel was a drifter in the United States, somehow escaping the police over and over until the mid-2000s. https://www.nickiswift.com/339306/the-most-bizarre-things-about-the-golden-state-killer-case/ https://heavy.com/entertainme…
 
Immunotherapies are showing increasingly promising results for the treatment of patients with non-Hodgkin lymphoma (NHL) and, in particular, bispecific antibodies have demonstrated promising clinical results in heavily pre-treated patients. Several bispecific antibodies have entered the early stages of clinical trials since the approval of the CD19…
 
At present, four types of chimeric antigen receptor T-cell (CAR-T) therapy are FDA approved for specific types of lymphoma: for relapsed or refractory (R/R) mantle cell lymphoma, brexucabtagene autoleucel, for R/R follicular lymphoma, axicabtagene ciloleucel, and for some aggressive forms of non-Hodgkin lymphoma, axicabtagene ciloleucel, tisagenlec…
 
Asthma, Allergies and Travel. These words can strike fear in those who have to encounter all of these together. I will go over tips in this episode on how to make a trip safer. Note - I used the word "safer" because in some instances, even if you've taken appropriate steps, dander and other allergens can travel on other people's clothes. Contact: E…
 
an actress onstage and an engineer studying for finals, 2011/2018 show notes Hear our first episode where we ask for 100 reviews, and also leave us an Apple podcasts review! Case plugs our last episode on our year in podcasting Casey also references our school episode last year where we talk briefly about college towards the end Cass references our…
 
Although classical Hodgkin lymphoma has a high cure and overall survival rate, the treatment of relapsed/refractory disease, treatment-related adverse events, quality of life and poor outcomes in older patients present ongoing unmet needs. Much research is currently focused on risk stratification, such as with positive emission tomography (PET) sca…
 
Hematopoietic stem cell transplantation (HSCT) is used as a treatment option for a wide variety of hematological disorders. Graft-versus-host disease (GvHD) is a systemic disorder that arises when the graft’s immune cells recognize the host as foreign and attack the recipient’s body cells. Its occurrence poses a major medical complication that limi…
 
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