The Rare Disease Legislative Advocates (RDLA) is excited to host a State Advocacy Day, offering a powerful opportunity for residents affected by rare diseases to come together and make their voices heard. Advocacy Day is a unique chance to meet with state legislators, share your personal experiences, and help advance the policy priorities that impact the rare disease community in Pennsylvania.
Why Attend?
State-level healthcare policies play a crucial role in shaping the lives of those living with rare diseases. These policies affect everything from diagnosis and treatment to access to care, and more. Meeting with policymakers face-to-face can be one of the most effective ways to influence meaningful change. By sharing your story, you can help ensure that the needs of rare disease patients are understood and prioritized by state legislators.
Upcoming Advocacy Day Event
- Where: Hilton Harrisburg (One N 2nd St, Harrisburg, PA 17101) & Pennsylvania State Capitol Complex (501 N 3rd St, Harrisburg, PA 17120)
- When: Tuesday, October 1st, 2024, 9 AM – 5 PM ET
- Who: All Pennsylvania Rare Disease Advocates
- What: Pennsylvania State Advocacy Day
- Register Here
Event Agenda
- October 1st, 2024 | 9 AM – 1 PM ET
In-Person Legislative Conference
Connect with local organizations and fellow advocates to discuss key legislative priorities for the rare disease community. Enjoy breakfast and lunch while learning more about how your advocacy efforts can make a difference. (Speakers to be announced soon!) - October 1st, 2024 | 1 PM – 5 PM ET
Meetings With State Legislators
Participants will break into groups to meet with their state legislators, sharing their stories and advocating for policy changes that matter to the rare disease community. These meetings are pre-scheduled, so all you'll need to bring is your passion for the cause!
Important Information
Before Advocacy Day, there will be a Mandatory Training Webinar on Monday, September 23rd, 2024, from 1 PM – 2 PM ET. During this session, you’ll learn about the legislative priorities for the upcoming event and how to effectively advocate when meeting with state legislators.
Get Involved and Make an Impact!
Your voice matters, and by attending this event, you can directly influence policy decisions that affect the rare disease community in Pennsylvania. Register today and be part of a movement that brings hope and change to thousands of lives!
