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Coverage of our work & advancements in developing gene therapies to treat neurodegenerative conditions.

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There are significant advancements being made in the field of gene replacement therapy, including for diseases impacting the Central Nervous System. More than 400 gene therapy trials are currently underway in the United States.

A Brief History of Riaan Research Initiative

RESEARCH UPDATES

Riaan Research Initiative partners with Rarebase to identify drugs that may assist patients with Cockayne Syndrome, a fatal neurodegenerative genetic disorder.

Press Release

Riaan Research Initiative funds Cockayne Syndrome gene replacement therapy research at UMass Chan Medical School 

"The partnership of the Medical School's gene therapy team with the Riaan Research Initiative will lead to a first-in-human AAV gene therapy clinical trial for Cockayne Syndrome as fast as humanly possible. Children like Riaan inspire us to work harder every day to overcome and persist through the challenges in research to give them a change at a better life."
— Miguel Sena-Esteves, PhD, UMass Chan Medical School
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IN THE NEWS

UMass Chan receives $2.2M for research into rare genetic disorder Cockayne syndrome

My Son Was Born With An Incredibly Rare Disease & Fighting for His Life Isn’t Anything Like I Imagined

Personal Reflections on Riaan & Riaan Research Initiative: Listen Here

We have already achieved the impossible': fighting a rare childhood disease with hope.

Interview with RRI Founder, Jo Kaur

Scientists Partially Restored a Blind Man’s Sight With New Gene Therapy

An experimental gene therapy was little Alissa's only hope. Now, instead of certain death, she faces an uncertain future

First Gene Therapy for Tay-Sachs Disease Successfully Given to Two Children

Central Utah toddler makes remarkable progress after groundbreaking gene replacement therapy

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