WE BELIEVE

A Cure is Within Reach

Project Alive was founded by families for families, with the purpose of finding a cure for Hunter syndrome. We envision a world where every individual with Hunter syndrome has access to curative medicine. Our path to a cure is simple: Advancing a Cure, Advocating for Access, and Empowering our Community. Join us in giving our kids a chance to grow up.

Our Stories

What Is

Hunter Syndrome

Hunter syndrome is a rare genetic disease that is progressively debilitating, life-limiting and without a cure. It occurs almost exclusively in males and currently affects approximately 500 boys in the U.S. and less than 2,000 worldwide.

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Our Resources

How We Support You

Parent & Caregiver

Resources

Project Alive is committed to empowering parents and caregivers navigating the challenges of Hunter syndrome (MPS II). Our "Resources for Parents and Caregivers" page offers medical resources, educational tools, supportive services and more.

Understanding the challenges and nuances parents and caregivers face in their daily lives, we have curated a wealth of resources and tools to guide you along this journey. We invite you to explore these resources and become part of our supportive community dedicated to those affected by Hunter syndrome.

Resources

Living with Hunter Syndrome

Resources for Affected Individuals

Project Alive is dedicated to empowering individuals diagnosed with Hunter syndrome (MPS II) by providing comprehensive resources tailored to their unique needs. Our "Resources for Affected Individuals" page offers medical guides, expert connections, educational support, and other supportive tools.

We invite you to explore these resources and join our community committed to supporting those affected by Hunter syndrome.

Resources

Provider Resources

Clinicians, Therapists, Educators, Etc.

Project Alive is commited to support the healthcare professionals, therapists, and teachers that work with our community every day. Our "Resources for Providers" page offers educational materials, clinical resources, newborn screening guides, and curated resources for therapists and educators.

Resources

Our Mission and Vision

The Project Alive Path To A Cure

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Advancing a Cure

We support the advancement of science to improve medical treatment and find a cure.

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mother and son looking off into the distance

Advocating for Access

We expand access to quality medical care, including early diagnosis and life improving treatment.

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Empowering our Community

We equip our community with knowledge and resources to navigate all stages of life.

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Connection

We are an organization created by families, for families. We believe that together we can create a world where every individual with Hunter syndrome has access to curative medicine.

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Getting Involved

Our Events and Conferences

We host and participate in events to raise awareness, promote research, and fundraise to support our cause. Our conferences are a place to participate in panels, hear from speakers, make connections with other families, and enjoy live entertainment.

Our Events