Real Stories
We know that beginning with their first symptoms through an often long path to diagnosis and treatment, people living with a rare disease have to navigate a sobering new normal while managing other life priorities.
But rare disease patients persevere. With our help, they’re reconnecting, moving forward, and making every day of their life what they want it to be.
Adelyn
Diagnosed with HPP at 2 days old
Aimee
Living with gMG
Albie
Diagnosed with LAL-D as an infant
Alyssa
Diagnosed with aHUS at 21 years old
Bill
Diagnosed with PNH at 28 years old
Donnan
Diagnosed with aHUS at 39 years old
Erica
Diagnosed with aHUS at 22 years old
Evie
Diagnosed with HPP at 2 weeks old
Jill
Diagnosed with aHUS at 28 years old
Joe
Diagnosed with PNH at 24 years old
Julia
Diagnosed with aHUS at 15 years old
Justice
Diagnosed with aHUS at 9 months old
Kendall
Diagnosed with NF1 at 10 weeks old
Kim
Diagnosed with NMOSD
Lisa
Diagnosed with PNH at 34 years old
Liz
Living with gMG
Maureen and Lauren
Diagnosed with LAL-D at 8 and 12 years old
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Meg
Diagnosed with NMOSD at 15 years old
Ruthie
Diagnosed with PNH at 28 years old
Tanner
Diagnosed with HPP at 4 days old
The Trendy Family
Diagnosed at 17, 14, 11, and 9 with LAL-D
Tristan
Diagnosed with LAL-D at 5 years old
Victor
Diagnosed with PNH at 27 years old