Pennsylvania Rare Disease Day

PENNSYLVANIA RARE DISEASE DAY

 

The Pennsylvania Rare Disease Day event is to empower rare disease patients to effectively share their stories and gain knowledge around the legislative process to influence change.  We have the additional goal of educating and informing our legislators on issues affecting rare disease patients, and how they too can most effectively work with them to provide better outcomes throughout the Commonwealth.

Rare disease patients throughout Pennsylvania are faced with unique, often life-threatening challenges every day. Of the nearly 10,000 rare diseases in the US, only a few hundred have any established treatment.

Life Sciences PA, in partnership with the Pennsylvania Rare Disease Advisory Council (PARDAC), and the National Organization for Rare Disorders (NORD) invite you to participate in the 2023 Pennsylvania Rare Disease Day. This complimentary event will bring together, patients, policy makers and researchers to raise awareness on the challenges facing the rare disease community throughout the Commonwealth, and highlight the ways in which Pennsylvania is – and can continue to be – a leader in rare disease research and development.

Agenda:

10:05 am – Welcome and Introductions

10:15 am – Panel Discussion – Incentivizing Rare Disease Research and Development in PA

11:30 am – Press Event in the Capitol Rotunda

12:15 pm – Lunch with Legislators

 

If you have any questions about the event, please contact Kurt Imhof, Senior Vice President of Policy and Public Affairs, KImhof@lifesciencespa.org

Pictures from Rare Disease Day 2022: