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Cure Rare Disease in the News

Cure Rare Disease's accomplishments are being recognized in the media.

We’re finally here’: Harvard graduate spearheads custom gene therapy for younger brother
Meet the family working with scientists to fight rare diseases with CRISPR therapy
Saving lives and creating a more equitable future
Cure Rare Disease receives FDA approval to begin first-in-human clinical trial for DMD
August 8, 2022

Cure Rare Disease Collaborates With SickKids on Three-Year CRISPR Research Project
February 22, 2022

$500,000 initiative with Toronto children’s hospital aims to develop genome editing therapies for Duchenne muscular dystrophy patients

With CRISPR gene editing, unique treatments begin to take off for rare diseases
February 5, 2022

Researchers and patients are excited about recent advancements, but such experiments have their own sets of risks and challenges

Hope on the Horizon
October 10, 2021

On Dec. 5, 2003, Ian Sharp was diagnosed with Becker muscular dystrophy. He was only 10 years old. From that day on, the Sharps, a local Aspen family, have been on a desperate search to find a cure for their son.

Forbes 30 Under 30 2021: Healthcare
October 1, 2021

Revolutionary Genetic Research Could Change the Lives of those with Rare Diseases
September 21, 2021

NEW HAVEN, Conn. — Terry Horgan is a 26-year-old who works at Cornell University. He’s very tech savvy. Currently, he gets around in a motorized wheelchair due to a rare disease called Duchenne muscular dystrophy.Linda Horgan is Terry’s mother.“When we found out Terry had this, it’s like life left you," Linda said. "It’s like being in an elevator and it just drops.”Muscular dystrophy is characterized by the progression of muscle weakness throughout one’s life....

Cornell Employee from Montour Falls to be First to Receive New Therapy for Rare Disorder
June 17, 2021

Terry Horgan, a Cornell graduate and now a Cornell employee, will be the first person in the world to undergo a possible cure for Duchenne muscular dystrophy. Horgan's brother Rich, also a Cornell graduate, is the founder and president of Cure Rare Diseases, the biotech nonprofit behind the treatment.

Hope on the Horizon for Branford Boy, 5, with Debilitating, Fatal Disease
May 31, 2021

BRANFORD — Max Herzog, 51/2, was a “strapping boy” of almost 11 pounds at birth, so it was a shock for his parents to hear at about 6 months old that he had Duchenne muscular dystrophy, a rare disease that eventually would put him a wheelchair, then take his life.

Organization Looks to Help Families Impacted by Rare Diseases
May 31, 2021

Cure Rare Disease, a nonprofit biotechnology research organization, will hold a fundraising event on June 5 in Stamford.

Forbes' "30 Under 30" List Highlights the Future Leaders of Biotech
May 20, 2021

Richard Horgan – 29-year-old Richard Horgan is the founder of Boston-based Cure Rare Disease, a non-profit biotech that develops custom-made drugs for rare diseases, including Duchenne muscular dystrophy. Horgan’s brother Terry is a DMD patient. Cure Rare Disease is currently working on a CRISPR-based therapeutic for this disease. The non-profit has raised about $2.3 million to conduct research on this drug, as well as others in its pipeline.

Team Led by Monkol Lek Advances Past Pre-IND Phase with DMD Gene Therapy
April 27, 2021

Duchenne Muscular Dystrophy (DMD) was first documented in the 1860s. More than a hundred years later, researchers discovered...

Unconventional Life Show: Changing the World One Step at a Time with Cure Rare Disease Founder Rich Horgan
April 26, 2021

Ep269: Changing the World One Step at a Time, with Cure Rare Disease founder Rich Horgan

Twitch Streamer, Esports Community Rally Behind Boston Entrepreneur Looking to Cure Brother’s Rare Muscle Condition
March 30, 2021

The gaming community is getting behind a Boston biotech entrepreneur’s quest to cure his younger brother’s rare genetic muscle condition. For the better part of his adult life, Rich Horgan has been working to fund a customized gene therapy designed specifically for his brother, Terry Horgan, who suffers from Duchenne muscular dystrophy, a rare inherited disease that causes significant muscle degeneration over time — and one that is fatal.

The Mighty: How One Rare Disease Research Company Has Adapted to COVID-19
February 4, 2021

For many rare disease patients, the wait for treatment and research advancements can feel like a never-ending process. This wait is made…

Rich Horgan of Cure Rare Disease Named to Forbes '30 Under 30' 2021
December 3, 2020

Recognizing the Nonprofit Biotech Founder’s Leadership in the Groundbreaking Development of Customized Therapeutics to Treat Duchenne Muscular Dystrophy & Other Rare Diseases...

Rich Horgan Featured as a Business Insider’s 30 Under 40
October 14, 2020

As the US learned to handle surges in COVID-19 cases that overwhelmed hospitals and shut down cities and confronted systemic racism amid protests sparked by the police killing of George Floyd, healthcare leaders have been navigating a new reality.‍

The Gamer: Rare Disease Organization Using Fortnite to Raise Money For Charity
August 31, 2020

An organization devoted to offering treatment to those diagnosed with rare genetic disorders, Cure Rare Disease (CRD), has announced a…

Rich Horgan: “It’s all about the people you surround yourself with”
July 9, 2020

Leadership, to me, is defined as having the courage to imagine a better future and the conviction to not give up despite the challenge. No challenge worth solving is easy and it is a leader’s job to convince others to believe in the vision of a better tomorrow. Whether this is solving the problem of […]

Meet the Family Working with Scientists to Fight Rare Diseases with CRISPR Therapy
June 18, 2020

Terry Horgan, 24, is suffering from a rare form of muscular dystrophy. His brother Richard created a nonprofit called Cure Rare Disease...

Cure Rare Disease’s Rich Horgan Pioneers Customized Medicine to Treat Brother with DMD
January 20, 2020

Rich Horgan’s younger brother, Terry Horgan, is the inspiration behind Cure Rare Disease...

Custom CRISPR Therapies Could be Closer than you Think
October 29, 2019

Rich Horgan has assembled a team to quickly develop a gene-editing therapy for his brother’s rare form of muscular dystrophy. Other people with rare diseases hope they are next

Milasen: The Drug that Went from Idea to Injection in 10 months
October 16, 2019

A custom antisense oligonucleotide drug has set records for both personalization and speed in drug development

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