Not So Rare Podcast

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It is estimated that over 300 million people are affected globally by rare diseases. Although each rare disease only affects a small group of individuals, we believe that by sharing our experiences living with a rare disease, we can help the broader rare

Taylor and Liz

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    • Aug 15, 2023 LATEST EPISODE
    • infrequent NEW EPISODES
    • 26m AVG DURATION
    • 49 EPISODES


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    Latest episodes from Not So Rare Podcast

    Rare Disease and Family Planning - Part 4

    Play Episode Listen Later Aug 15, 2023 32:28


    This week Taylor and Liz revisit their Rare Disease and Family Planning mini-series. In this episode, Taylor shares some exciting updates on her journey. We also revisit Liz's story.Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook and Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support!

    Life Update from Taylor & Liz

    Play Episode Listen Later May 31, 2023 31:16


    Taylor and Liz use this week's episode to provide an update on what is new with their lives over the last several months.Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook and Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support!

    Advocacy

    Play Episode Listen Later Apr 16, 2023 20:20


    In this week's episode, Taylor and Liz discuss their own path in identifying ways to be advocates for their Rare Disease. When choosing ways to help your rare disease community, consider identifying advocacy areas that interest you and can have a broad impact.Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook and Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support!

    THE Not So Rare Mom

    Play Episode Listen Later Mar 24, 2023 32:52


    You have heard Taylor and Liz's story, this week we are excited to have THE Not So Rare Mom join the podcast. Taylor's mom joins to share her perspective as a Rare Disease Mom while supporting her daughter through her education and life milestones while also supporting her diagnostic, clinical, and advocacy journeys.  Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook and Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support!

    Challenges of the Self-Diagnosed

    Play Episode Listen Later Feb 26, 2023 21:28


    Many rare disease patients struggle with obtaining a diagnosis for their disease. Often this leaves patients trying to research on their own in order to help the process. Taylor and Liz this week discuss the challenges and impacts of patients who have self-diagnosed their disease.Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook and Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support!

    Post Appointment Anxiety

    Play Episode Listen Later Feb 19, 2023 33:16


    Medical appointment anxiety does not end once you leave the doctor's office. This week Taylor and Liz discuss their experiences with post - appointment anxiety along with how they have learned to cope throughout their medical journies.Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook and Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/store/not-so-rare-podcast-store/ and show your support!

    Fundraising

    Play Episode Listen Later Feb 5, 2023 19:50


    Join Taylor and Liz as they discuss fundraising as it relates to the rare disease patient population. Focus is placed on the patient's role in fundraising efforts along with the impact fundraising has on both patients and their families.Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook or on Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/wear-your-rare/ and help support to show your support!

    Meet Lily - Advocating through Community

    Play Episode Listen Later Jan 22, 2023 33:20


    This week, Taylor and Liz are excited to have Lily join the podcast. Lily is living with VACTERL Association. In this week's episode, Lily discusses more about her disease along with sharing how she has worked to help support her own rare disease community. She also discusses an impactful camping experience that helped her build deeper connections. For more information related to VACTERL Association, please click here. Additionally, for more information related to camping experiences for youth living with bowel and/ or bladder system conditions, please click here.Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook or on Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/wear-your-rare/ and help support to show your support!

    Exploring Dual Therapy Treatments

    Play Episode Listen Later Jan 8, 2023 26:48


    Join Taylor and Liz this week as they discuss a recent key medical appointment where Taylor explores utilizing dual therapy to help control her disease and symptoms.Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook or on Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/wear-your-rare/ and help support to show your support!

    Rare Disease and Family Planning - Part 2 - Taylor

    Play Episode Listen Later Dec 18, 2022 32:22


    As part of the second episode in their Rare Disease and Family Planning series, Taylor and Liz discuss the impact that rare diseases and treatments have had on Taylor's family planning. Topics included relating to the impact rare disease has had on her fertility and options available related to growing a family. Trigger Warning: Family Planning and Fertility JourneySupport the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook or on Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/wear-your-rare/ and help support to show your support!

    Thanksgiving and Holiday Update

    Play Episode Listen Later Dec 11, 2022 13:30


    Taylor and Liz have been taking some time over the Thanksgiving and Winter holidays to spend time with their family and friends. Listen to this week's episode to hear more about how they enjoy the holidays while managing 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.com. We love to hear from all of you!Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook or on Instagram!Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Visit our official merchandise store at https://www.bonfire.com/wear-your-rare/ and help support to show your support!

    Visiting a New Specialist: A New Patient Perspective

    Play Episode Listen Later Dec 4, 2022 26:49


    Rare disease patients often see many different specialists to help manage their disease. This week, Taylor and Liz discuss the challenges that new patients experience when visiting a new specialist for the first time.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 showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook or on Instagram!Visit our official merchandise store at https://www.bonfire.com/wear-your-rare/ and help support to show your support!

    Catch Up with Taylor and Liz

    Play Episode Listen Later Nov 20, 2022 32:43


    Taylor and Liz thought this would be a good week to catch up after having a small break. Topics this week range from vacation updates, fertility journey progress, experiencing COVID with a rare disease, and so much more!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 showSupport the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook or on Instagram!Visit our official merchandise store at https://www.bonfire.com/wear-your-rare/ and help support to show your support!

    Rare Disease Myth Busters - Part 6

    Play Episode Listen Later Oct 30, 2022 24:18


    Welcome back to the final installment 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 into 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 About 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 at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook or on Instagram!Visit our official merchandise store at https://www.bonfire.com/wear-your-rare/ and help support to show your support!

    Rare Disease Myth Busters - Part 5

    Play Episode Listen Later Oct 23, 2022 22:21


    Welcome back to part 5 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 into 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 About 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 at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!Support the showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook or on Instagram!Visit our official merchandise store at https://www.bonfire.com/wear-your-rare/ and help support to show your support!

    Get to Know Us Better - Part 2

    Play Episode Listen Later Oct 16, 2022 36:56


    Taylor and Liz thought it would be fun to get to know both of them a little bit better. In this part two episode, they answer the second half of questions inspired by Vogue Magazine as interpreted by Oui in Paris.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 showWant to support and connect further with Taylor and Liz?Follow and connect with us on Facebook or on Instagram!Visit our official merchandise store at https://www.bonfire.com/wear-your-rare/ and help support to show your support!

    Meet Lindsay - Living with CLOVES

    Play Episode Listen Later Oct 9, 2022 29:00


    Taylor and Liz are excited to have Lindsay join the podcast as part of this week's episode. Lindsay is a young adult who shares her experiences both being diagnosed as well as living with CLOVES. CLOVES stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis. Thank you for sharing your story with our community Lindsay!Please click here if you are interested in learning more about CLOVES and the CLOVES Syndrome Community.Support the show

    Get to Know Us Better - Part 1

    Play Episode Listen Later Sep 25, 2022 28:24


    Taylor and Liz thought it would be fun to get to know both of them a little bit better. In this part one episode, they answer the first half of questions inspired by Vogue Magazine as interpreted by Oui in Paris.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!

    Rare Disease and Family Planning - Part 1 - Introduction

    Play Episode Listen Later Sep 18, 2022 24:34


    Rare Disease patients and their families often need to plan differently when considering options surrounding growing their family. Taylor and Liz are passionate about starting the conversation with rare disease patients of all ages. This is the first episode in a new series of episodes dedicated to options available when considering family planning. Our hope is that through hearing our stories, we can help our listeners begin their own conversations about family planning.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!

    Meet Sara - Preparing Rare Disease Patients for School

    Play Episode Listen Later Sep 11, 2022 29:41


    This week Taylor and Liz are really excited to have Sara join and share the story of her journey with her son who was born with Imperforate Anus. Sara shares her journey in finding care for her son's rare condition. Additionally, Sara provides details on key information for families sending their rare disease kids back to school. Click here if interested in learning more about Imperforate Anus. Thanks for joining us, Sara! 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!

    Meet Chris - Creating Rare Disease Connections

    Play Episode Listen Later Sep 4, 2022 28:29


    Taylor and Liz are joined by special guest Chris who shares her journey living with Hypertrophic Olivary Degeneration as well as Sporadic Cerebral Cavernous Malformations. Chris has worked hard to build connections across the patient and medical community to raise awareness and increase research on her disease. If interested in learning more, please refer to https://hodassoc.org/ . Thanks for joining us Chris!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!

    Rare Disease Myth Busters - Part 4

    Play Episode Listen Later Aug 28, 2022 24:08


    Welcome back to part 4 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 from a 2019 article appearing on The Mighty (25 Misconceptions About 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 at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!If interested in hearing more of Taylor's last Disney adventures, make sure to check out Episode 8 on our favorite 'all things Disney' podcast - Make it Magical.

    Meet Leeya - Exploring the World with Rare Disease

    Play Episode Listen Later Aug 24, 2022 17:57


    In this week's surprise bonus episode, Taylor and Liz meet with fellow rare disease patient, Leeya, who had the wonderful experience of studying abroad this past year. Thanks, Leeya, for sharing your experiences managing your disease while exploring the world!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!

    Meet Emily - Creating Roles for the Patient and Family

    Play Episode Listen Later Aug 21, 2022 28:44


    Taylor and Liz are excited to invite Emily to this week's podcast episode. Emily shares her inspiring story of navigating her daughter's diagnosis and establishing a treatment plan. Throughout her story, it is evident that there are creative roles that the young patient and all members of the family can serve in both treatment and patient advocacy. Thank you for joining us this week Emily!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!

    For the Parents - Smooth Transition of Care

    Play Episode Listen Later Aug 14, 2022 25:56


    This week's episode is targeted at our audience of rare disease parents. Taylor and Liz discuss ways to help parents enable their kids with a rare disease to take ownership of their care and treatment plans. Managing care and treatment is overwhelming for all of us, and finding ways to help with this at a young age can make for a smoother transition.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!

    Rare Disease Myth Busters - Part 3

    Play Episode Listen Later Aug 7, 2022 25:02


    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 from a 2019 article appearing on The Mighty (25 Misconceptions About 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 at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

    Mini Episode - Alpelisib Update

    Play Episode Listen Later Aug 3, 2022 11:47


    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.com. We love to hear from all of you!

    International Healthcare - UK vs US

    Play Episode Listen Later Jul 31, 2022 31:11


    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 'Episode 5 - Meet Rosie.' 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!

    Sharing Side Effects with Medical Teams

    Play Episode Listen Later Jul 24, 2022 28:53


    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 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 message us at notsorarepodcast@gmail.com. We love to hear from all of you!

    Sirolimus vs Alpelisib - Experiences from Two Young Adult Patients

    Play Episode Listen Later Jul 17, 2022 43:32


    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 patients can play in advancing treatment options through clinical trials and research.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!

    Rare Disease Myth Busters - Part 2

    Play Episode Listen Later Jul 10, 2022 20:18


    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 About 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 at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

    Rare Disease Myth Busters - Part 1

    Play Episode Listen Later Jul 3, 2022 19:15


    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 About 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 at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

    What We Wish Doctors Knew

    Play Episode Listen Later Jun 26, 2022 27:34


    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. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

    The Moment When ......

    Play Episode Listen Later Jun 19, 2022 27:10


    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 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!

    Overcoming Fatigue as a Rare Disease Patient

    Play Episode Listen Later Jun 12, 2022 23:34


    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, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

    Rare Disease and Dating - Part 2

    Play Episode Listen Later Jun 5, 2022 25:08


    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 message us at notsorarepodcast@gmail.com. We love to hear from all of you!

    Mini Episode - Gratitude

    Play Episode Listen Later Jun 1, 2022 8:07


    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!

    Rare Disease and Dating - Part 1

    Play Episode Listen Later May 29, 2022 23:35


    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 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!

    Update from Liz

    Play Episode Listen Later May 22, 2022 24:15


    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 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!

    Meet Taylor and Liz - Part 2

    Play Episode Listen Later May 15, 2022 36:41


    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@gmail.com. We love to hear from all of you!

    Meet Cameron Ayala

    Play Episode Listen Later May 8, 2022 28:23


    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? 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!

    Meet Jen - The Perspective of a Rare Disease Parent

    Play Episode Listen Later May 1, 2022 23:23


    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 learning more about the foundation started by Jen's family in Canada.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!

    Managing Medical Appointments

    Play Episode Listen Later Apr 24, 2022 27:43


    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 Facebook at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

    The Patient's Role in Rare Disease Research

    Play Episode Listen Later Apr 17, 2022 30:45


    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 Facebook at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

    Meet Rosie

    Play Episode Listen Later Apr 10, 2022 29:54


    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 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!

    Managing School and Rare Disease

    Play Episode Listen Later Apr 3, 2022 29:13


    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 at the NotSoRarePodcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

    Acceptance

    Play Episode Listen Later Mar 27, 2022 23:11


    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 love to hear from all of you!

    Coping with Rare Disease

    Play Episode Listen Later Mar 20, 2022 29:47


    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.com. We love to hear from all of you!

    Meet Taylor and Liz

    Play Episode Listen Later Mar 13, 2022 34:47


    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!

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