Artwork

Inhalt bereitgestellt von Joanna. Alle Podcast-Inhalte, einschließlich Episoden, Grafiken und Podcast-Beschreibungen, werden direkt von Joanna oder seinem Podcast-Plattformpartner hochgeladen und bereitgestellt. Wenn Sie glauben, dass jemand Ihr urheberrechtlich geschütztes Werk ohne Ihre Erlaubnis nutzt, können Sie dem hier beschriebenen Verfahren folgen https://de.player.fm/legal.
Player FM - Podcast-App
Gehen Sie mit der App Player FM offline!

From Researcher to Lymphocytic Colitis Patient Ben From South Dakota

1:29:05
 
Teilen
 

Manage episode 479581050 series 3485028
Inhalt bereitgestellt von Joanna. Alle Podcast-Inhalte, einschließlich Episoden, Grafiken und Podcast-Beschreibungen, werden direkt von Joanna oder seinem Podcast-Plattformpartner hochgeladen und bereitgestellt. Wenn Sie glauben, dass jemand Ihr urheberrechtlich geschütztes Werk ohne Ihre Erlaubnis nutzt, können Sie dem hier beschriebenen Verfahren folgen https://de.player.fm/legal.

Send us a text

In this episode of Rare Connection, I sit down with Ben, a rare disease researcher and advocate with over 15 years of experience in cell and molecular biology, clinical research, and leadership. Ben shares his personal journey living with lymphocytic colitis and oral lichen planus—two often misunderstood conditions—and his professional insights from working on projects like the CoRDS Rare Disease Registry and the Experimental Therapeutics Screening Facility at Sanford Research.

We talk about his path into research, how rare and overlooked diseases are studied, and the realities of living with chronic and invisible illnesses. We also touch on the importance of access to medical nutrition and support for rare disease patients.

This conversation is for educational and informational purposes only and should not be considered medical advice. Always consult your healthcare provider for personal medical care.

Rare Connection is available on YouTube and wherever you get your podcasts! Follow us on Facebook, X (formerly Twitter), LinkedIn, and join our private Facebook group for more rare disease community support.

💬 Comment below or send me a text through the link in the show notes if you want to connect!

🛒 Check out our new Invisible Disability Awareness t-shirt on Bonfire, combining the sunflower (for invisible disabilities) and the zebra (for rare diseases)! Link in the description. https://www.bonfire.com/invisible-disability-rare-disease-awareness/

❤️ If you’d like to support the show financially, there’s also a 'Support the Show' link in the show notes.

📞 If you or someone you know is struggling, help is available.

  • Call or text the Suicide and Crisis Lifeline at 988
  • Text HOME to 741741 to reach a trained crisis counselor.

Thank you for being part of Rare Connection!

#RareDisease #InvisibleDisability #PatientAdvocacy #LymphocyticColitis #OralLichenPlanus #RareConnection #RareChef

Support the show

  continue reading

Kapitel

1. From Researcher to Lymphocytic Colitis Patient Ben From South Dakota (00:00:00)

2. [Ad] & so much more (00:12:53)

3. (Cont.) From Researcher to Lymphocytic Colitis Patient Ben From South Dakota (00:13:43)

62 Episoden

Artwork
iconTeilen
 
Manage episode 479581050 series 3485028
Inhalt bereitgestellt von Joanna. Alle Podcast-Inhalte, einschließlich Episoden, Grafiken und Podcast-Beschreibungen, werden direkt von Joanna oder seinem Podcast-Plattformpartner hochgeladen und bereitgestellt. Wenn Sie glauben, dass jemand Ihr urheberrechtlich geschütztes Werk ohne Ihre Erlaubnis nutzt, können Sie dem hier beschriebenen Verfahren folgen https://de.player.fm/legal.

Send us a text

In this episode of Rare Connection, I sit down with Ben, a rare disease researcher and advocate with over 15 years of experience in cell and molecular biology, clinical research, and leadership. Ben shares his personal journey living with lymphocytic colitis and oral lichen planus—two often misunderstood conditions—and his professional insights from working on projects like the CoRDS Rare Disease Registry and the Experimental Therapeutics Screening Facility at Sanford Research.

We talk about his path into research, how rare and overlooked diseases are studied, and the realities of living with chronic and invisible illnesses. We also touch on the importance of access to medical nutrition and support for rare disease patients.

This conversation is for educational and informational purposes only and should not be considered medical advice. Always consult your healthcare provider for personal medical care.

Rare Connection is available on YouTube and wherever you get your podcasts! Follow us on Facebook, X (formerly Twitter), LinkedIn, and join our private Facebook group for more rare disease community support.

💬 Comment below or send me a text through the link in the show notes if you want to connect!

🛒 Check out our new Invisible Disability Awareness t-shirt on Bonfire, combining the sunflower (for invisible disabilities) and the zebra (for rare diseases)! Link in the description. https://www.bonfire.com/invisible-disability-rare-disease-awareness/

❤️ If you’d like to support the show financially, there’s also a 'Support the Show' link in the show notes.

📞 If you or someone you know is struggling, help is available.

  • Call or text the Suicide and Crisis Lifeline at 988
  • Text HOME to 741741 to reach a trained crisis counselor.

Thank you for being part of Rare Connection!

#RareDisease #InvisibleDisability #PatientAdvocacy #LymphocyticColitis #OralLichenPlanus #RareConnection #RareChef

Support the show

  continue reading

Kapitel

1. From Researcher to Lymphocytic Colitis Patient Ben From South Dakota (00:00:00)

2. [Ad] & so much more (00:12:53)

3. (Cont.) From Researcher to Lymphocytic Colitis Patient Ben From South Dakota (00:13:43)

62 Episoden

Alle Folgen

×
 
Loading …

Willkommen auf Player FM!

Player FM scannt gerade das Web nach Podcasts mit hoher Qualität, die du genießen kannst. Es ist die beste Podcast-App und funktioniert auf Android, iPhone und im Web. Melde dich an, um Abos geräteübergreifend zu synchronisieren.

 

Kurzanleitung

Hören Sie sich diese Show an, während Sie die Gegend erkunden
Abspielen