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Summer Mini #9: Our Complicated Relationship with Medically Complex Facebook Groups

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Manage episode 430758882 series 3248851
Content provided by Madeline Cheney. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Madeline Cheney 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://player.fm/legal.

You know that thing that you can’t seem to live without, but also don’t want to live with most of the time? That seems to describe the relationship most of us have with the medically complex and rare disease Facebook group community.

In this episode, we’re sharing all your thoughts, feelings, and frustrations with these crucial, life-saving, and yet sometimes difficult to navigate spaces on the internet.

Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!

Links:

Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

  continue reading

206 episodes

Artwork
iconShare
 
Manage episode 430758882 series 3248851
Content provided by Madeline Cheney. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Madeline Cheney 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://player.fm/legal.

You know that thing that you can’t seem to live without, but also don’t want to live with most of the time? That seems to describe the relationship most of us have with the medically complex and rare disease Facebook group community.

In this episode, we’re sharing all your thoughts, feelings, and frustrations with these crucial, life-saving, and yet sometimes difficult to navigate spaces on the internet.

Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us!

Links:

Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

  continue reading

206 episodes

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