Discussion Group Topics: *Space is limited, Advanced registration required.
*session offered on both days, please register for one
The Role of Student Advocacy Groups in Driving Change
From awareness events, to conducting research, to reforming curricula, students have driven rare disease advocacy forward. Learn more about opportunities to further engage with student groups and drive change.
Selecting Clinical Trial Endpoints *
Join this facilitated discussion on the challenges and opportunities surrounding the selection of clinical trial endpoints and resources available for support.
Partnering for Progress *
A strong relationship between patient advocacy groups and industry is critical to patient centric rare disease drug development. Explore ways to build and strengthen this partnership while maintaining good ethical guidelines.
Rare Cancer Breakthroughs
Discuss the latest breakthroughs in rare cancer research and care. Learn about how the Rare Cancer Coalition advocates on behalf of this community.
The Impact of Patient Registries in Accelerating Rare Disease Treatments and Cures
What does it take to launch a patient registry? Learn from IAMRARE platform users how they got started and how their registry has informed and encouraged research.
The Mental Health Needs of Rare Disease Patients and Families
Rare diseases pose unique mental health challenges to patients and families. Join this discussion on how we, as a community, can best provide support and resources to those living with rare diseases and their families.
The ABCs of PFDDs (Patient Focused Drug Development)
PFDDs afford patients the opportunity to amplify their voice at the FDA. How do they get started? What role do all stakeholders play in PFDDs? Through discussion with patient advocates, come learn the basic principles of PFDDs.
Make Your Voice Heard in State and Federal Policy
Explore the various ways you can take action on key policy issues to help improve the health and well-being of individuals living with rare diseases and their families.