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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
Undiagnosed Children: What to Do Next
Parents of children with rare diseases may spend years tracking down effective treatments as they manage symptoms...
Rare Parenting
Jan 19, 20245 min read
Navigating Life with Malan Syndrome: Presley's Inspiring Story and How mejo Can Help Your Family
Written by: mejo At mejo, we have the privilege of connecting with extraordinary families navigating complex rare diseases. Today, we’re...
mejo
Dec 25, 20234 min read
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Celebrating Every INCHstone for Rare Disease Day
Matthew’s spirit shines through every day. His long list of diagnoses does not define him; instead, he teaches us to appreciate every....
mejo
Feb 253 min read
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