Individualized Case Management | Project Alive

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Individualized Case Management

Provides personalized guidance for families with a designated case manager.

program overview

Mission and Meeting Format

Program Purpose

To reduce the stress of families navigating life with Hunter syndrome by providing the family with one on one case management.

Who We Are For

Families of children with Hunter syndrome who need extra support and access to resources.

Meeting Format

Ongoing one-on-one virtual case management sessions with a dedicated case manager, tailored to each family’s unique needs.

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Updates and News

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Denali Community Update March 2026

F.D.A. Faces Upset Over Denials of New Drugs

Agency officials promise fast reviews of new treatments while vowing they will not be a “rubber stamp” for the industry. But patients with rare diseases view recent decisions as signs that the doors are closing on their options.

BBC Breakfast Oliver "Ollie" Chu

Ollie and Dr. Simon Jones made it on BBC Breakfast for a feature with Fergus Walsh about gene therapy for his MPSII Hunter Syndrome.

Boy with rare condition amazes doctors after world-first gene therapy | BBC News

Three-year-old Oliver Chu has astounded doctors with his progress after becoming the first person in the world with his devastating disease to receive a ground-breaking gene therapy.

Project Alive Launches "Hunter Health"