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From Researcher to Lymphocytic Colitis Patient Ben From South Dakota

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Manage episode 479581050 series 3485028
Content provided by Joanna. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Joanna or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.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

50 episodes

Artwork
iconShare
 
Manage episode 479581050 series 3485028
Content provided by Joanna. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Joanna or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.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

50 episodes

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