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The Rare Life

36: Rare Disease Day 2021, The Parent-Perspective

43 min • 28 februari 2021

In this special collaborative Rare Disease Day episode, twelve parents come together to share a little about their children with rare conditions. This is a tribute to all children with rare diseases everywhere, and their parents who love them more than life.

These twelve moms tell us a bit about their child’s diagnosis, what it was like to find out about it, and what they want the world to know about their child.

And its gold.

In their 2-4 minute segments, they capture a variety of perspectives and unique situations, but they all have one thing in common; they love their children profoundly.

Links:

Join the FB group Parents of Children with Rare Conditions: https://www.facebook.com/groups/parentsofrare/permalink/419788272495139/?comment_id=419995795807720&reply_comment_id=420670799073553

FreeArm Tube Feeding Assistant: https://freearmcare.com/

Instagram accounts:

Madeline Cheney, host: @the_rare_life

Eliza +Lorenza: @chargeonwardandupwards

Harper + Morgan: @hustleheartsandhospitals

Beau + Kim: @beaus.journey

William + Bethany: @joyfulblondie

Isaac + Brianna: @brianna.alcox

Freeman + Misti: @freearm.tube.feeding.assistant

Jade + Phylicia: @shortandsweet.pnw

Mauve + Morgan: @mauvevalentina

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