Pennsylvania State Ambassador
What's Happening Now?
PATIENT ADVOCACY & ORPHAN DRUG WORKSHOP February 1, 2019 from 8:30am to 3:00pm, Allentown, Pennsylvania. The National Organization for Rare Disorders invites all advocates to attend and participate in the patient advocacy and orphan drug workshop.
This will be an opportunity to learn about rare disease patient advocacy and connect with NORD about current legislative actions. In addition, this workshop will feature an opportunity to speak directly with members of Congress from Pennsylvania about the Orphan Drug Act. This event is hosted at no cost to participants. Light breakfast and lunch will be provided. Register Today!
ONLINE REGISTRATION HAS CLOSED
If you’d like to attend this event please contact Rose Avellino, Grassroots Advocacy Manager, email@example.com or 202-838-1177
*NOTE: This event is in Spring 2019*
Please join Pennsylvania Rare Action Network for Rare Disease Day Advocacy Event Tuesday, May 7, 2019 10:00am at the Pennsylvania State Capitol, 501 N 3rd St, Harrisburg, PA 17120. Patients, families, caregivers, medical professionals and industry representatives are invited to attend this important event to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state of Pennsylvania. REGISTER HERE
Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Pennsylvania Rare Action Network to attend your event? Contact your State Ambassador today and learn more. Please check back regularly for news of upcoming events and activities in Pennsylvania.
In order to make meaningful change in the lives of rare disease patients and their families in the state of Pennsylvania, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.
State Report Card
In this third edition of NORD’s State Policy Report Card we are seeking to expand our analysis to more issues that affect the rare disease community while also providing a more targeted analysis of policies analyzed in previous editions of the report.
Scoring for State Policies
A: State policy meets all desired standards. An A grade is considered the model policy that other states should seek to enact.
B: State policy meets most, but not all desired standards
C: State policy on the given issue meets minimum standards
D: State has some policy in place, but it does not meet the standards of higher tiers
F: State has no policy provision for the relevant issue
Teresa D. Miller, Commissioner
Pennsylvania Insurance Department
1326 Strawberry Square
Harrisburg, Pennsylvania 17120
1-877-881-6388 or 717-783-3898
Pennsylvania Consumer Assistance Program
1209 Strawberry Square
Harrisburg, PA 17111
215-560-2630 or 1-877-881-6388