Posted on March 23, 2023
Speaks Out During Connecticut Rare Disease Day
HARTFORD – State Representative Mitch Bolinsky (R-106) spoke during Connecticut Rare Disease Day at the Legislative Office Building in Hartford on Thursday, March 23. Throughout his tenure in the legislature, Bolinsky has advocated for those impacted by rare diseases, more than 60 percent of whom are children. He was an introducing cosponsor of the public act that created the state’s task force that led to passage of legislation to create Connecticut’s Permanent Rare Disease Council, the work of which began in 2022.
Connecticut has designated February 28th as Rare Disease Day. This year’s day was moved to March due to a February 28th snowstorm.
Rep. Bolinsky said, “From the moment I was first introduced to the Rare Disease community, eight-years ago by a young Sandy Hook constituent, I was taken by her, her family’s and the community’s dedication and exceptional grass-roots advocacy efforts, This has become a team of ‘can-do’ advocates that have stood together, knowing their influence could not be overlooked. Collectively, their work on behalf of the many living with a Rare Disease has been impressive!
There are more than 7,000 known “rare diseases”. Despite this, they do share a few common-threads, like the need for early detection, outside-the-box research, innovative treatments and affordable access to care. Using each stride-forward as a stepping-stone to further, broader progress holds the potential of improving so many lives. The council’s mission is to leverage resources, and where practical, drive cures along parallel paths. I am incredibly proud to be associated with, and to support this diverse team, what they’ve already achieved, and what they’ll accomplish, moving forward.”
Connecticut Rare Disease Day takes place throughout the state and serves as an opportunity for patients, caregivers, medical professionals, industry representatives and public officials to come together, share their stories and voice their support for as many as 300,000 people in Connecticut living with a rare disease.
There are approximately 7,000 rare diseases and almost 1 in 10 Americans is impacted by them, which tend to be extremely costly to treat and often result in death. Rep. Bolinsky hopes that raising awareness will bring more donations, funding, treatments, and one day a cure.
To learn more visit www.rarediseases.org.
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