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Advocates, patients spread awareness during National Rare Disease Week

HARTFORD, Conn. (WTNH) — Advocates and patients with rare diseases spent Tuesday morning talking with lawmakers and educating the public as part of National Rare Disease Week. One of the best speakers at the Capitol Complex was also the youngest. Anay Vaidya is 9 years old and has hemophilia, a blood disorder. 'Where, like, your body has this mutation, so the blood can't clot properly unless you have the medications,' Vaidya explained. There are more than 7,000 rare diseases worldwide. Advocates and patients came to Hartford to call for more help from the state government. Vaidya may be just nine, but he's seen major progress in treatment during his lifetime. 'Before, I had to take two shots a day, then once a day,' Vaidya said. 'Then I had to do it every two days, but now, because of the advancements, I have to do it once a week.' Progress is also being made at the state level in addressing rare diseases. The state created an advisory council on rare diseases. That formed in the past couple of years. During this legislative session, lawmakers look at ways to fund the council better. One would allow the council to take donations and not rely on state funding. Another would allow rare disease patients to enroll in the HUSKY health plan regardless of income. Others deal with treatment, and the council is all about raising awareness. 'As well as information to the community so people can get diagnosed quicker and not have to go through a long journey to figure out what their real issues are,' said Dominic Cotton, a rare disease advocate on the advisory council. Mary Caruso's children were diagnosed when they were young. Alex and Sam have Friedreich's Ataxia, which causes progressive damage to the nervous system. 'We were able to learn to adapt to the progression and still live our lives and do good things,' said Caruso, a North Branford resident. One of those is to remind everyone that patients are people, too. As Vaidya says, just people with a disease. 'Just because someone has one, they don't have to be separated, and we should just all be aware of it,' Vaidya said. Which is why it's so important for him to keep telling his story. Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.