top of page
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...
Podcasts
Mar 1, 20242 min read
Child Life on Call - Episode 189 | Ryan’s Story- A son with Costello Syndrome
Meet Ryan Sheedy, an incredible father who, much to his own surprise, found himself immersed in the delightful chaos of caring for twin...
International Rett Syndrome Foundation
Jul 17, 20233 min read
International Rett Syndrome Foundation Unveils My Rett Ally to Support Caregivers of Individuals with Rett Syndrome
My Rett Ally, a web application powered by mejo, is specifically designed for Rett syndrome patients and families to simplify and enhance...
mejo
6 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...
Featured blog
Blog
Real stories from real caregivers and experts.
bottom of page