The Rare Life

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


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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!

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The Rare LifeBy Madeline Cheney

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