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Smiles for Ceci
While Rett has changed her life and our life as a family, it hasn’t changed the wonderful little girl Ceci is and always would be with or wi
Brien Gearin
Nov 4, 20243 min read
Teamwork makes the dream work.
Every appointment, every meeting, every moment, “are we doing enough?”. Often there’s no definitive answer and we’re left to figure it out.
Myra Holland
Oct 2, 20244 min read
mejo and Seattle Children’s Collaborate to Enhance Patient Care with Innovative Visual Narrative Feature
The collaborative effort aims to empower families to easily create visually stunning showcases highlighting their loved ones' lives...
mejo
Sep 10, 20242 min read
From Isolated Dad to Connected Founder: How Community Shaped My Journey with HIE and Youth Crews
When our daughter was born with HIE (Hypoxic-Ischemic Encephalopathy), it felt like our worldhad shrunk to the size of a hospital room.
Brady Crandall
Sep 5, 20243 min read
In the Room: Let’s Make Caregiving a Bit Easier
This IN THE ROOM event featured 2 Rare Parents who Founded platforms.
Courageous Parents Network
Sep 3, 20242 min read
Our Unexpected Hospital Visit While On Vacation
As a parent of a child with a rare and complex medical condition, every outing can feel like a high-stakes operation...
Ryan Sheedy
Jul 11, 20243 min read
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Our favorites
Industry podcasts worth checking out!
Turning advocacy into power for patients and families.
Advocacy is a word we hear often in healthcare. But for many families, advocacy isn’t a choice, it’s survival. For me, it started the day my son Reynolds was born.
From the delivery room to the NICU to countless appointments and hospital stays, advocacy has been woven into every step of our journey.
Ryan Sheedy
1 day ago3 min read
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Real stories from real patients, caregivers and experts.
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