Staneski Raises ‘Rare Disease Day’ Awareness

From the Connecticut General Assembly: State Rep. Pam Staneski (R-119) observed ‘Rare Disease Day’ at the State Capitol. Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

The purpose of this event is to raise awareness at the state level for the 1 in 10 individuals living with a rare disease and the challenges they face. Many important decisions related to rare diseases are made at the state level.

During the event, attendees had the opportunity to meet and hear from members of the bioscience and biopharma industries, rare disease patients, medical professionals, and State Rep. Staneski and other state legislators who support the rare disease community.

“Hearing the harrowing stories by the families in attendance is very inspiring. Today is just one way we as a state can come together and raise awareness for those who have a rare disease,” said Rep. Staneski.

A rare disease is one that affects fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting nearly 30 million Americans, according to the National Institutes of Health.

• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases touch children.

Photo courtesy of the Connecticut General Assembly