Sen. Maria Collett Is Named Co-Chair Of PA Rare Disease Legislative Caucus

HARRIBSURG — State Sen. Maria Collett, a Democrat representing parts of Montgomery and Bucks Counties, has been named co-chair of Pennsylvania's Rare Disease Legislative Caucus, the senator's office announced on Monday.

Collett will join State Sen. Judy Ward, a Republican from a south-central Pennsylvania district, as co-chair of the caucus, which says it works closely with the governor's Rare Disease Advisory Council on matters relating to rare disease among commonwealth residents.

The council is made up of Pennsylvania's Secretaries of health, human services and education, along with the state insurance commissioner and members of the general public.

"The two groups share a mutual goal of improving quality of life for all those affected by rare disease in the Commonwealth," Collett's office stated in a news release.

Collett, who is a registered nurse by trade, said she was honored to join the caucus as co-chair.

"As someone with a background in direct patient care, I look forward to working with patients, advocates, stakeholders, and PA Rare Disease Advisory Council members to advocate for the one in 12 Pennsylvanians living with a rare disease."

According to Collett's office, there are around 1.2 million Pennsylvanians who have a rare disease, which is defined as a disease or condition that affects less than 200,000 people nationwide.

Collett said as one of her first acts as co-chair of the legislative caucus, she will be collaborating with the advisory council in spreading awareness about the Pennsylvania Rare Disease Needs Assessment Survey, which was created to learn more about the needs of individuals, families and loved ones of those suffering from a rare disease.

Collett said her goal with pushing the importance of the survey is to get "patients and their families to provide important data and feedback to help guide future policy initiatives and allow us to better serve Pennsylvania's rare disease community."

Collett's announcement was made on Monday, which has been designated Rare Disease Day, a global recognition.