March 23, 2023

Kennedy Supports Rare Disease Research

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(HARTFORD) — On Thursday, State Representative Kathy Kennedy (R-119) attended the National Organization for Rare Disorders (NORD) Press Conference to demonstrate her support for expanding research, support programs, and awareness of rare diseases that affect Connecticut residents. In May of 2022, Connecticut officially established a Rare Disease Advisory Council (RDAC) which gives individuals an opportunity to make formal recommendations to health care legislation that will improve the lives of those impacted by a rare disease in Connecticut.

Conditions that affect less than 200,000 Americans is defined as “rare”. Today, there are more than 7,000 known rare diseases that affect 25-30 million Americans through various conditions. People living with rare diseases face many challenges from obtaining an accurate and timely diagnosis to finding a health care provider with expertise in their condition. The lack of affordable care for these specific conditions presents one of the most pressing challenges among those affected by rare diseases.

“It is powerful to see the impact of the RDAC in such a short time,” said Rep. Kennedy. “Working on this issue with my colleagues on the Public Health Committee has been an absolute privilege, especially as it has exposed me to new information, stories, and relationships with so many constituents. I am proud to stand as an advocate for an often forgotten concern that surprisingly affects many Connecticut residents, even in Milford and Orange alone.”

To view the full press conference, please see the video link HERE. For any additional questions on this or any other state issue, never hesitate to reach out to Rep. Kennedy at Kathy.Kennedy@housegop.ct.gov or at 860-

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