REAL STORIES

Living Their Lives Every Day

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.

FILTER

Conditions

Chelsey, living with NMOSD, sitting on a couch

CHELSEY
LIVING WITH NMOSD

 Albie, diagnosed with LAL-D as an infant, with his mother

ALBIE
LIVING WITH LAL-D

 Donnan, diagnosed with aHUS at 39 years old, and his son

DONNAN
LIVING WITH aHUS

 Joe, diagnosed with PNH at 24 years old, with his fiancée and child

JOE
LIVING WITH PNH

 Julia, diagnosed with aHUS at 15 years old, holding a dog

JULIA
LIVING WITH aHUS

 Roberta, diagnosed with gMG at 16 years old

ROBERTA
LIVING WITH gMG

 Tanner, diagnosed with HPP at 4 days old, with a stuffed animal

TANNER
LIVING WITH HPP

 Victor, diagnosed with PNH at 27 years old, with his fiancée and child

VICTOR
LIVING WITH PNH

 Erica, diagnosed with aHUS at 22 years old

ERICA
LIVING WITH aHUS

 Jill, diagnosed with aHUS at 28 years old, with her daughter

JILL
LIVING WITH aHUS

 Justice, diagnosed with aHUS at 9 months old, with his parents

JUSTICE
LIVING WITH aHUS

 Adelyn, diagnosed with HPP at 2 days old

ADELYN
LIVING WITH HPP

 Evie, diagnosed with HPP at 2 weeks old, playing on a playground

EVIE
LIVING WITH HPP

 Maureen & Lauren, diagnosed with LAL-D at 8 and 12 years old, with their parents and brother

MAUREEN & LAUREN
LIVING WITH LAL-D

 The Trendys, diagnosed at 17, 14, 11, and 9 with LAL-D, with their parents

TRENDY FAMILY
LIVING WITH LAL-D

 Tristan, diagnosed with LAL-D at 5 years old

TRISTAN
LIVING WITH LAL-D

 Bill, diagnosed with PNH at 28 years old, with his wife

BILL
LIVING WITH PNH

 Ruthie, diagnosed with PNH at 28 years old, with her husband

RUTHIE
LIVING WITH PNH
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