Wait, How Do You Spell That? A Rare Disease Podcast
The 2022 Living Rare, Living Stronger Patient and Family Forum

The 2022 Living Rare, Living Stronger Patient and Family Forum

June 21, 2022

In this episode, we sit down with Tiffany Sammons and Pam Mace from our partners over at NORD to preview the upcoming Living Rare, Living Stronger Patient and Family Forum. This exciting yearly event brings together patient advocates and their families from around the world.

Learn more about the Patient and Family Forum, taking place June 26 in Cleveland, Ohio, here.

Follow Nord on social media: Facebook Twitter Instagram LinkedIn

Getting the Support You Need, feat. Cancer Commons

Getting the Support You Need, feat. Cancer Commons

May 27, 2022

In this episode, we speak with Shelley Frisbie and Dr. Kaumudi Bhawe of Cancer Commons, a non-profit dedicated to providing assistance to advanced cancer patients. We discuss why having a dedicated support team can be so helpful and why every cancer diagnosis is unique.

To learn more about Cancer Commons, visit their website here. You can also connect with them on Facebook, Twitter and LinkedIn.

The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich

The Importance of Persistence, feat. Patient Advocate Nathan Ehrlich

May 5, 2022

In this episode, we speak with Patient Advocate Nathan Ehrlich about SAMD9L mutations and their connection to a range of conditions, including bone marrow failure disorders, cytopenia and ataxia-pancytopenia syndrome. If you'd like to get in touch with Nathan, you can email him at nathan.ehrlich@gmail.com. You can also check out the SAMD9L mutations Facebook support page here.

Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust

Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust

March 31, 2022

In this episode of the podcast, we meet with our partners at the Myrovlytis Trust to talk about their work in rare disease research.

Keep up with the Myrovlytis Trust and their new initiatives here:

Myrovlytis Trust
www.myrovlytistrust.org
LinkedIn: https://www.linkedin.com/company/the-myrovlytis-trust
Twitter: @Myrovlytis
 
BHD Foundation
www.bhdsyndrome.org
Facebook: https://www.facebook.com/birthoggdube/
Twitter: @BHD_Foundation
BHD Registry: https://birt.healthie.net/register
 
Osteosarcoma Now
www.osteosarcomanow.org
Twitter: @OsteosarcomaNow  

Exciting Rare Disease Developments in the EU, feat. HAE Junior

Exciting Rare Disease Developments in the EU, feat. HAE Junior

February 28, 2022

Hello and Happy Rare Disease Day! This week, we discuss some exciting developments concerning rare disease awareness in the EU, specifically in the Czech Republic, with Camelia Isaic and Anežka Dašková of HAE Junior. To learn more about HAE Junior, click here. More information about HAE Junior art exhibition can be found here. Read more about the EU Council Presidency's focus on rare disease for 2022-2022 here. And keep up with Anežka's YouTube Channel here.

Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases

Preview: Rare Disease Week 2022 feat. The EveryLife Foundation for Rare Diseases

February 11, 2022

Britta Dornan and Sarah Tompkins from the EveryLife Foundation for Rare Diseases join us to preview Rare Disease Week 2022. This important event runs from February 22 through March 2 and brings together rare patients from across the U.S. to make their voices heard. To learn how you can get involved, visit the EveryLife Foundation website here, and follow along with #RAREDC2022 on social media.

Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics

Bridging the Challenges in Cell Therapies, feat. Dr. Brad Heller of Achieve Clinics

January 21, 2022

In this episode, we sit down with Dr. Brad Heller, the founder of Achieve Clinics, to discuss the potential of cell therapies, some of the current challenges and how his organization is tackling these. Learn more about Achieve Clinics here: www.achieveclinics.com.

The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant

The Importance of Getting Involved, Feat. Friedreich‘s Ataxia Advocate Kyle Bryant

December 21, 2021

This week, we talk to patient advocate and FA ambassador for the Friedreich's ataxia Research Alliance, Kyle Bryant, about the importance of getting involved in rare disease communities. To learn more about Friedreich's ataxia, visit curefa.org. Listen to Kyle's podcast, Two Disabled Dudes, at twodisableddudes.com.

The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries

The Potential of CAR T-Cell Therapy, Feat. Dr. Robyn Stacy-Humphries

December 15, 2021

In this episode, we sit down with Dr. Robyn Stacy-Humphries with Charlotte Radiology. She talks about her diagnosis of diffuse large B-cell lymphoma and treatment with CAR T-cell therapy.

To learn more about CAR T-cell therapy, click here: https://bit.ly/3GIAsAj.

Dr. Stacy-Humphries also recommends a private Facebook group for CAR T-cell patients and their care partners, here: https://bit.ly/3oUvAly

Not Just Surviving, But Thriving With Pheo vs. Fabulous

Not Just Surviving, But Thriving With Pheo vs. Fabulous

November 12, 2021

In this episode, we speak with Miranda Edwards, the voice behind Pheo vs. Fabulous about her journey with pheochromocytoma. That's an ultra-rare endocrine tumor that produces adrenaline, characterized by symptoms such as rapid heartbeat and dangerously high blood pressure, among others. Topics discussed: self-advocacy, the importance of awareness, living with a terminal diagnosis and more. Learn more about Miranda and her journey by visiting her website, PheoVsFabulous.com. You can also find out more about pheochromocytoma by visiting the Pheopara Alliance at PheoPara.org.

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