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Does Your Child Need Genetic Testing?
While you might think your child is only at risk of a genetic disease if a certain condition runs in the family...
Rare Parenting
Jul 10, 20244 min read
Shining the Sun on Caregivers
“Reynolds would never have been ready for his upcoming kindergarten year without his time at Sunshine School,” said Reynolds’ father, Ryan
Tricia Moore
Jul 8, 20243 min read
The Rare Disease Rollercoaster: ER prepared while on an intensive trip.
Riding the Rare Disease rollercoaster comes with many unexpected twists and turns, sometimes we find ourselves in situations we never imagin
mejo
Jul 2, 20244 min read
Tethered Spinal Cord Syndrome and Surgery: What Parents Need to Know
A tethered spinal cord (or tethered spinal cord syndrome) is a developmental abnormality that occurs in about 2 of every 1,000 births...
Rare Parenting
Jun 25, 20243 min read
Navigating Rare Disease Challenges: How My Rett Ally Became a Mom's Secret Asset
In the wild ride of parenthood, nothing quite prepares you for the unexpected
twists and turns that life throws your way.
mejo
Jun 24, 20245 min read
Navigating the Complexities of Costello Syndrome
Today, we bring you the heartfelt testament of Amber, a devoted mother and caregiver, whose journey with her daughter Ryiah...
mejo
Jun 17, 20244 min read
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Industry podcasts worth checking out!
IgG4ME! — A New Care Coordination App Built for the IgG4‑Related Disease Community
Living with IgG4‑Related Disease (IgG4‑RD) can feel overwhelming—especially when trying to manage symptoms, communicate with multiple specialists, and keep track of tests, medications, and flare patterns. The complexity is real. The support tools have been limited—until now.
That’s why the IgG4ward! Foundation partnered with mejo, a digital health company focused on rare and complex conditions, to launch IgG4ME!—a free care coordination and symptom-tracking app built speci
mejo
5 days ago2 min read
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