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, virtual 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. In addition to this event, Life Sciences PA is working with its partners to hold an in-person event – including a press conference and lunch with legislators – at a later date in 2023.
Agenda:
9:00 am - Welcome and Introductions
9:10 am - Panel Discussion – Strengthening Coverage for Rare Disease Patients
10:00 am - Panel Discussion - Incentivizing Rare Disease Research and Development in PA
10:45 am - Update from the PA Rare Disease Advisory Council
If you have any questions about the event, please contact Kurt Imhof, Senior Vice President of Policy and Public Affairs, [email protected]
