HARRISBURG, PA — The PA Rare Disease Advisory Council (PARDAC) and Life Sciences PA will host their annual Rare Disease Awareness Press Conference at the Pennsylvania State Capitol. The event will highlight the ongoing challenges faced by over 1.2 million Pennsylvanians living with rare diseases, share personal stories from patients and caregivers, and acknowledge the recent passage of legislation by committees that will extend the Council’s work for another three years. With bills having cleared both House and Senate committees, advocates are now urging a full vote on the floor of each chamber to ensure the continuation of the Council’s mission. The program will also feature a tribute to the late Anna Payne, Vice Chair and founding member of PARDAC, whose legacy continues to guide the Council’s efforts.
WHO: Marie Conley, (Dauphin County, PA) Co-Chair, PA Rare Disease Advisory Council; Rare Disease Patient; Founder, The Conley Cushing’s Disease Fund
Christopher Molineaux, President & CEO, Life Sciences Pennsylvania
Sen. Judy Ward (R-30), Co-Chair, PA Rare Disease Caucus
Sen. Maria Collett (D-12), Co-Chair, PA Rare Disease Advisory Council
Sen. Michele Brooks (R-50), Chair, Senate Health & Human Services Committee
Rep. Barbara Gleim (R-199), Co-Chair, PA Rare Disease Caucus
Rep. Nate Davidson (D-103), Co-Chair, PA Rare Disease Caucus
Kayla Day, (Somerset County, PA) Parent Advocate & PARDAC Member
WHAT: PA Rare Disease Awareness Press Conference
WHEN: Monday, June 23, 2025, at 11:00 am
WHERE: Main Rotunda, Pennsylvania State Capitol, Harrisburg, PA
Legislators, patient advocates, and PA Rare Disease Advisory Council members will be available for interviews following the event.
About the PA Rare Disease Advisory Council
Established in 2017 through bipartisan legislation, the PA Rare Disease Advisory Council is comprised of patients, caregivers, healthcare professionals, researchers, and advocates. The Council works to improve the lives of individuals living with rare diseases through collaboration, education, policy guidance, and awareness.
About Life Sciences PA
Founded in 1989, Life Sciences Pennsylvania is the statewide trade association for the life sciences ecosystem. Through advocacy, connections, and resources, LSPA helps ensure that Pennsylvania remains a leader in biotechnology, pharmaceuticals, medical devices, diagnostics, and more.