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Show Notes: Episode 2.13 - Patient Advocacy & Insurance

Updated: Jun 14

Original Air Date: June 12, 2024

We're back this week with the final segment of our interview with Megan Karanfil to dive deeper into her role as a patient advocate, how advocates can help, and why they're so important to patients, especially "complex" ones like those of us with EDS, neurodivergence, and other co-morbidities.

Co-Hosts: Luna and Shelli

Special Guest: Megan Karanfil, BCPA

Megan is a patient and professional that has a passion for helping Zebras. Her business, The Herd's Nerd, provides advocacy and consulting services to patients who need help with a variety of issues that patients experience. She is also on the EDS consortium and authors materials such as journal articles to help in the treatment of EDS and comorbid conditions and has has spoken at several of the Society conferences. She runs several groups on facebook including a local EDS group for the Maryland, DC and Virginia area. Her goal is for you to know you are not alone and deserve support, no one should have to go through this by themselves.

Find Megan on Facebook, Instagram, and TikTok

Disclaimer: The information provided in this podcast episode is for educational purposes only and should not be considered as medical advice. Consult with healthcare professionals for personalized guidance on managing Ehlers-Danlos Syndromes. 

Important Takeaways:

  • Patient Advocates can be an incredible addition to your care team.

  • Some Patient Advocates offer pro-bono or lower cost services to try and help patients.

  • Patient Care Managers can be helpful, but in a limited capacity.

  • Local Support Groups can provide helpful insights for local resources and doctors.

Links to Resources and Topics Mentioned In This Episode

Advocate Information

Patient Advocate Certification Board -

Greater National Advocates -


00:00 - Episode Introduction by Shelli

01:26 - Austic "Know It All"

06:05 - Best Life Possible

10:18 - Closing Thoughts

13:25 - What about Patient Care Managers?

18:37 - Patient Advocates vs. Patient Care Managers

20:48 - Patient Advocates for Families

22:33 - Telehealth Options

Thank you so much for joining us this week. If you haven't already, please remember to work your magic (Like, Follow, Share, Subscribe, leave a Review) on whichever platform you're joining us on; it truly helps more people find us and it's an easy (and free!) way to help support the podcast.

You can now also support the show by making a one-time donation here, or a monthly contribution through Spotify! Simply go to our show's Spotify page and click "Support This Podcast". Your support will help us reach our goals to improve our recording quality and make other improvements to the podcast.

Every bit helps, and we appreciate your support, follows, ratings, and shares so much! Thank you, Bendy Baddies!

Our thanks again to our wonderful guest, Megan Karanfil, for taking time to speak with us and giving us some inside information about the world of patient advocacy.

Wishing you happy, healthy hypermobility!

-Tiffany | Assistant Producer

Feel free to email to me with any questions!


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