Pennsylvania Rare Disease Day empowers rare disease patients and their caregivers, and recognizes the specific challenges affecting this community in their access to care. This event raises awareness of the unique policy obstacles affecting rare disease patients and their families, and is a chance to educate and inform our legislators and administration officials on how they can most effectively work together for 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.
On Monday, March 18 in Harrisburg, in partnership with the Pennsylvania Rare Disease Advisory Council (PARDAC) we will be hosting a Press Conference and Legislative Luncheon. Please join patients, policy makers and researchers to raise awareness on the challenges facing the rare disease community throughout the Commonwealth. Additionally, the PARDAC will be releasing its Community Needs Assessment survey and report to highlight the ways in which Pennsylvania is – and can continue to be – a leader in rare disease research and development.
DETAILS:
Date and Time: Monday, March 18 – 11:00 a.m. to 1:45 p.m.
Where: Pennsylvania Capitol Complex – Main Rotunda and 60 East Wing
This year’s Pennsylvania Rare Disease Day Event will begin with a press event at 11:00 a.m. and be followed by a lunch with legislators at 12:00 p.m.
If you have any questions about the event, please contact Kurt Imhof, Senior Vice President of Policy and Public Affairs, [email protected]