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patient advocacy mission

Our highest priority is to meet the needs of patients with commitment and compassion.  We strive to learn from patients, families, caregivers and patient advocacy leaders in order to understand the aspirations and daily challenges each of them face. 

Hannah & Cassidy

Virginia Beach, VA

Sisters living at home.

Erica

Juneau, WI

Researcher at Gene Spotlight Charity

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Noah

San Francisco, CA

AJ & Aiden

Ocean City, NJ

Jack

Thousand Oaks, CA

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If I woke one day and I wasn't in pain, I'd probably be dead.

Hannah

14 years old

There is often too much focus on the diagnosis instead of on the person, and helping them to become somebody.

Erica

34 years old

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Israel

Albuquerque, NM

Christian

Atlantic City, NJ

Luke

Ann Arbor, MI

Miles

Santa Barbara, CA

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Jay

Ann Arbor, MI

Sammy

Santa Clarita, CA

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MPS I

HURLER SYNDROME

Noah

Project Alive Episode

AJ & Aiden

On the Playground

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Israel and Family

Luke

Playing Violin

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Hannah & Cassidy

Playing with Mom

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Jay & Luke

ATV in the Backyard

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training modules

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