Not So Rare Podcast

Welcome back to part 3 of the Rare Disease Myth Busters series! In this series of episodes, Taylor and Liz discuss their opinions and experiences with rare disease myths. Over the next several episodes, our hosts will break apart common myths and provide insights on how these myths are prevalent within their own lives as rare disease patients. Myths identified within this mini-series originated fr...

In this special mini-episode, Taylor and Liz share updates based on their experiences with alpelisib. This is a follow-up from their comparison of sirolimus and alpelisib side effects. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook at the NotSoRarePodcast . Also, feel free to message us at notsorarepodcast@gmail....

Access to healthcare for patients is dramatically different internationally. This week, Taylor and Liz have invited guest host Rosie back to the Not so Rare podcast to compare access to care between the US and the UK. Today's topics include access to specialists as well as other healthcare benefits across the two locations. To learn more about Rosie's story, make sure to check out '...

Rare disease patients experience many different symptoms and side effects from their disease and treatment plans. Patients are faced with questioning what they should share with their medical teams during their appointments. In this week's episode, Taylor and Liz break apart what leads to these concerns and how they have benefited from connecting with their medical teams throughout their care...

Taylor and Liz focus this week's episode on their past experiences with two different medications for vascular anomalies - sirolimus and alpelisib. Taylor and Liz have experienced treatment with both medications as part of their care journey. This week's episode focuses on side effects experienced and their opinions on the treatment options. The episode ends with a discussion on the role...

In this series of episodes, Taylor and Liz discuss their opinions and experiences with rare disease myths. Over the next several episodes, our hosts will break apart common myths and provide insights on how these myths are prevalent within their own lives as rare disease patients. Myths identified within this mini-series originated from a 2019 article appearing on The Mighty ( 25 Misconceptions Ab...

In this series of episodes, Taylor and Liz discuss their opinions and experiences with rare disease myths. Over the next several episodes, our hosts will break apart common myths and provide insights on how these myths are prevalent within their own lives as rare disease patients. Myths identified within this mini-series originated from a 2019 article appearing on The Mighty ( 25 Misconceptions Ab...

In this week's episode, Taylor and Liz focus on areas they wish their doctors and care providers understood better from the patient perspective. Our two co-hosts also provide insights on how to address these areas with your own care team. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook at the NotSoRarePodcast...

At some point in the diagnostic journey, there is a turning point where a rare disease patient starts to understand that their symptoms may be something more. Taylor and Liz use today's episode to discuss this moment within their lives and how that has impacted their approach to their disease and care. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at th...

One side effect of rare disease which has been prevalent for both Taylor and Liz is fatigue. In this week's episode, Taylor and Liz explain how fatigue has impacted their lives and the measures they both take to overcome fatigue. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook at the NotSoRarePodcast . Also,...

This week Taylor and Liz revisit the topic of relationships while living with rare disease. This week, our hosts focus on the impact rare disease has on single patients who are just starting their relationship journeys. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast  as well as on Facebook at the NotSoRarePodcast . Also, feel free to m...

Taylor and Liz wanted to issue a special mini-episode focused on gratitude this week. Thank you everyone for your help and support! Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast  as well as on Facebook at the NotSoRarePodcast . Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you! Support the sh...

Rare disease patients often are challenged with how to manage their disease while experiencing activities and milestones throughout the phases of their lives. In this week's episode, Taylor and Liz discuss the challenges of both dating and maintaining relationships while living with rare disease. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotS...

It can be normal for a rare disease patient to have multiple appointments and therapy sessions within a given week. Liz had a pretty hectic week leading up to recording this week's podcast. In today's episode, Liz shares some insights into her appointments this week along with a positive experience she had which helped ease her stress during a chaotic appointment week. Looking for update...

This week, Taylor and Liz wish to share more about their own rare disease, GLA. Our hosts focus specifically on the symptoms of GLA they each face and how this has impacted their daily life. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook at the NotSoRarePodcast . Also, feel free to message us at notsorarepodcast@...

Welcome special guest Cameron Ayala to this week's episode of the Not so Rare Podcast! Taylor and Liz sit down with Cam to discuss his life living with lymphedema. Cam shares his journey along with how he manages both his physical and mental health. Thank you Cam for joining us this week and helping to make us feel NOT SO RARE!!! Looking for updates or a way to connect with Taylor and Liz? Lo...

In this week's episode, Jen shares her perspective as a parent in her child’s rare disease journey. It can be immensely challenging making healthcare decisions for yourself, let alone a child. Join Taylor and Liz in this week's episode focusing on the impact of rare disease on both the parent and siblings of a rare disease patient. Please see https://willspower.org/ if interested in lear...

Rare disease patients need to juggle medical appointments and procedures around their own personal and professional schedules. Join Taylor and Liz this week as they discuss tips they have used to help manage the integration of medical appointments within their lives.  Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Faceboo...

Research is key for the advancement of treatment options for rare diseases. Join Taylor and Liz as they share their previous involvement in research for their own rare disease community. Additionally, our co-hosts also will share how past research has impacted their lives. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Fa...

Taylor and Liz are very excited to welcome Rosie as their first guest to the Not so Rare Podcast! In this week's episode, Rosie shares her journey living with Gorham's Stout disease. She highlights the importance of mental health and staying true to yourself while navigating life with a rare disease. Rosie also shares her own experiences as a competitive Powerchair athlete. Looking for u...

School causes additional challenges for rare disease patients. In addition to managing their disease symptoms, they also are working to maintain their course work and social lives. Join Taylor and Liz as they explore managing school while living with a rare disease. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook...

Rare disease patients undergo a journey to accept their disease across different segments of their lives. Join Taylor and Liz as they talk through their acceptance journies. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook at the NotSoRarePodcast . Also, feel free to message us at notsorarepodcast@gmail.com. We lov...

Rare disease can impact all areas of your life: work, school, and social. In today's podcast, join Taylor and Liz as they talk through ways that they cope with their rare disease. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook at the NotSoRarePodcast . Also, feel free to message us at notsorarepodcast@gmail....

Meet Taylor and Liz - Two young women who are living with rare disease who wish to share their personal disease journey. Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram at the NotSoRarePodcast as well as on Facebook at the NotSoRarePodcast . Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you! Support the show Want to s...