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.

In partnership with the Pennsylvania Rare Disease Advisory Council (PARDAC), and the National Organization for Rare Disorders (NORD) LSPA provides this complimentary, virtual event to bring together patients, policy makers and researchers to raise awareness on the challenges facing the rare disease community throughout the Commonwealth. It also highlights the ways in which Pennsylvania is – and can continue to be – a leader in rare disease research and development.