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International Rett Syndrome Foundation
May 16, 20244 min read
My Rett Ally: Revolutionizing Care Management for Rett Families
On a recent visit to the emergency room, it took just seconds for Samantha Brant to pull up a detailed, up-to-date medication list...


Effie Parks
May 16, 20242 min read
ONCE UPON A GENE - EPISODE 197 - Rare Disease Dad Chronicles - Ryan Sheedy
Ryan Sheedy is a dadvocate and the Co-Founder of My Mejo. He shares his journey of courage and determination to provide a service...

mejo
May 15, 20242 min read
A Mother and Daughter's Rare Journey: Navigating the Diagnosis Sea
In the vast expanse of the medical world, a journey towards diagnosis can often feel like navigating the open seas without a compass...

Bret Koncak
May 14, 20244 min read
Is 'Patient-Centered' enough for medically complex patients & families participating in clinical trials or new treatments?
When we ask patients or caregivers to do more, do they see a substantial return on their time investment?

Rare Parenting
Apr 27, 20243 min read
What Parents Need to Know About SUDEP – Sudden Unexpected Death in Epilepsy
Epilepsy affects up to 470,000 American children and about 11 million children ages 15 and under worldwide.

Rare Parenting
Mar 18, 20244 min read
What is a Child Life Specialist in the Hospital?
Parents of children with medical conditions or complex needs are usually familiar with an array of hospital staff, including doctors...
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mejo
7 days ago4 min read
Finding His Voice: Jonathan’s Journey with an Ultra-Rare Disease and How He Advocates for All
When you’re living with a condition that fewer than 20 people in the world share, it can feel isolating—like carrying a secret...


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