Not So Rare Podcast

By Taylor and Liz

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Category: Health & Fitness

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Subscribers: 1
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Episodes: 49

Description

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 disease community with their rare disease journeys. Join us, Taylor and Liz, as we further explore the impact of rare diseases on our lives. Together we are 'Not so Rare!' Looking for updates or a way to connect with Taylor and Liz? Look for us on Instagram by following @NotSoRarePodcast as well as on Facebook by searching for Not So Rare Podcast. Also, feel free to message us at notsorarepodcast@gmail.com. We love to hear from all of you!

Episode Date
Rare Disease and Family Planning - Part 4
Aug 15, 2023
Life Update from Taylor & Liz
May 31, 2023
Advocacy
Apr 16, 2023
THE Not So Rare Mom
Mar 24, 2023
Challenges of the Self-Diagnosed
Feb 26, 2023
Post Appointment Anxiety
Feb 19, 2023
Fundraising
Feb 05, 2023
Meet Lily - Advocating through Community
Jan 22, 2023
Exploring Dual Therapy Treatments
Jan 08, 2023
Rare Disease and Family Planning - Part 2 - Taylor
Dec 18, 2022
Thanksgiving and Holiday Update
Dec 11, 2022
Visiting a New Specialist: A New Patient Perspective
Dec 04, 2022
Catch Up with Taylor and Liz
Nov 20, 2022
Rare Disease Myth Busters - Part 6
Oct 30, 2022
Rare Disease Myth Busters - Part 5
Oct 23, 2022
Get to Know Us Better - Part 2
Oct 16, 2022
Meet Lindsay - Living with CLOVES
Oct 09, 2022
Get to Know Us Better - Part 1
Sep 25, 2022
Rare Disease and Family Planning - Part 1 - Introduction
Sep 18, 2022
Meet Sara - Preparing Rare Disease Patients for School
Sep 11, 2022
Meet Chris - Creating Rare Disease Connections
Sep 04, 2022
Rare Disease Myth Busters - Part 4
Aug 28, 2022
Meet Leeya - Exploring the World with Rare Disease
Aug 24, 2022
Meet Emily - Creating Roles for the Patient and Family
Aug 21, 2022
For the Parents - Smooth Transition of Care
Aug 14, 2022
Rare Disease Myth Busters - Part 3
Aug 07, 2022
Mini Episode - Alpelisib Update
Aug 03, 2022
International Healthcare - UK vs US
Jul 31, 2022
Sharing Side Effects with Medical Teams
Jul 24, 2022
Sirolimus vs Alpelisib - Experiences from Two Young Adult Patients
Jul 17, 2022
Rare Disease Myth Busters - Part 2
Jul 10, 2022
Rare Disease Myth Busters - Part 1
Jul 03, 2022
What We Wish Doctors Knew
Jun 26, 2022
The Moment When ......
Jun 19, 2022
Overcoming Fatigue as a Rare Disease Patient
Jun 12, 2022
Rare Disease and Dating - Part 2
Jun 05, 2022
Mini Episode - Gratitude
Jun 01, 2022
Rare Disease and Dating - Part 1
May 29, 2022
Update from Liz
May 22, 2022
Meet Taylor and Liz - Part 2
May 15, 2022
Meet Cameron Ayala
May 08, 2022
Meet Jen - The Perspective of a Rare Disease Parent
May 01, 2022
Managing Medical Appointments
Apr 24, 2022
The Patient's Role in Rare Disease Research
Apr 17, 2022
Meet Rosie
Apr 10, 2022
Managing School and Rare Disease
Apr 03, 2022
Acceptance
Mar 27, 2022
Coping with Rare Disease
Mar 20, 2022
Meet Taylor and Liz
Mar 13, 2022