A nonprofit biotechnology company formerly based in Boston will celebrate its relocation to Connecticut this weekend.
Cure Rare Disease, which seeks to develop treatments for rare and ultra-rare diseases, will mark the official opening of its renovated laboratory facility and the relocation of its headquarters to Woodbridge.
The 30,000-square-foot lab and research space is located at 4 Research Drive. The company has a staff of five employees, as well as nine people on its board of directors and five on its scientific advisory board.
Cure Rare Disease is a 501(c)3 nonprofit organization founded by Rich Horgan in 2018. Horgan initially founded the nonprofit to help find a cure for his brother, Terry, who was diagnosed at the age of 3 with Duchenne muscular dystrophy, a genetic disorder that progressively weakens and degenerates muscle.
Terry Horgan died in October 2022, at age 27, during the early stages of the organization’s first clinical trial for a potential treatment. According to a report published by Genetic Engineering & Biotechnology News, an investigation determined that his death was likely due to an adverse reaction to a viral vector used to deliver the treatment.
In a letter in Cure Rare Disease’s 2022 Annual Report, Rich Horgan said that honoring his brother’s legacy “means continuing to celebrate our collective achievements and moving forward in our work to create a better future for rare disease patients and families.”
According to that annual report, the most recent available, the organization raised more than $2.6 million in 2022, with 95.7% spent on programs and 19 therapies in its development pipeline.
In February, Cure Rare Disease was awarded an advocacy collaboration grant from the Muscular Dystrophy Association (MDA) “to support research on novel reimbursement strategies for drugs developed for ultra-rare diseases.” The amount of the grant was not disclosed.
The celebration at its Woodbridge facility will include tours starting at 11:30 a.m., and a ribbon-cutting at 12:30 p.m. Sen. Richard Blumenthal, and representatives of AdvanceCT and BioCT are expected to attend.