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
Noah
San Francisco, CA
AJ & Aiden
Ocean City, NJ
Jack
Thousand Oaks, CA
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
Israel
Albuquerque, NM
Christian
Atlantic City, NJ
Luke
Ann Arbor, MI
Miles
Santa Barbara, CA
Jay
Ann Arbor, MI
Sammy
Santa Clarita, CA
MPS I
HURLER SYNDROME
Noah
Project Alive Episode
AJ & Aiden
On the Playground
Israel and Family
Luke
Playing Violin
Hannah & Cassidy
Playing with Mom
Jay & Luke
ATV in the Backyard