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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?
Bret Koncak
May 14, 20244 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
Apr 28, 20243 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...
Rare Parenting
Mar 19, 20244 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...
Podcasts
Mar 1, 20242 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...
International Rett Syndrome Foundation
Jul 18, 20233 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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