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

Alyssa
Diagnosed with aHUS at 21 years old

Donnan
Diagnosed with aHUS at 39 years old

Erica
Diagnosed with aHUS at 22 years old

Jill
Diagnosed with aHUS at 28 years old

Julia
Diagnosed with aHUS at 15 years old

Justice
Diagnosed with aHUS at 9 months old

Adelyn
Diagnosed with HPP at 2 days old

Evie
Diagnosed with HPP at 2 weeks old

Tanner
Diagnosed with HPP at 4 days old