Events
Welcome! We’re thrilled you’re interested in joining our events. To get started, simply click the ‘Join Event’ buttons below. You’ll be taken to our registration page, where you can easily add the events to your calendar and set up reminders.
We can’t wait to see you there!
Rare Disease Medicare Enrollment
October 30. 2025
12 noon ET
Enrolling in a Medicare plan is stressful! Ensuring our medications are covered not only feels like, but often literally IS life and death. Join us to walk through selecting a plan and engage in a conversation with a pharmacist about how to select a plan that meets your needs.
How Politics Impact Your Rare Disease Care
September 23. 2025
12 noon ET
Whether we like it or not… our access to care and treatment is impacted by policies and politics. Join us for a discussion about how current and future policies impact us. We will break it down into our disease experience and share what we can do to make sure we have the best possible treatment and care!
Decision Tree: Best Practice For Care
November 13. 2025
12 noon ET
Figuring out how to navigate the complex health care system can be maddening. Join us to learn about a tool that will help you find the care you need and reduce the stress and strain of making decisions each step of the way!
