2024 Agenda

Check back often for updates

Click here to get access to the full downloadable agenda >>

Friday, June 7, 2024 Saturday, June 8, 2024

5:00 pm - 7:00 pm

Welcome Reception

Registration will open at 4:30pm

8:00 am - 9:00 am

Networking Breakfast & Community Conversations

9:00 am

Kick-off/Opening Remarks 

9:10 am - 9:30 am

Opening Keynote (Patient/Family Story)

Listen to a rare family share their story of living rare, living stronger and be inspired by how they’ve taken “rare action” to fight for the rare disease community.  

9:30 am - 10:15 am

Health Equity for the Whole Rare Disease Community

Health equity is the state in which everyone has a fair and just opportunity to attain their highest level of health. In the rare disease community, inequities exist in the long odyssey to diagnosis and the difficulties in accessing treatments that many patients and families face. However, there is so much more at play in the fight for health equity for the estimated 30 million Americans living with rare diseases in America – depending on where they were born, where they live, their level of education, what their first language is, the color of their skin, etc. Join us to discuss some of the known challenges populations within the rare disease community experience and the role that we all play in advancing health equity. 

10:15 am - 11:00 am

Overcoming Insurance Barriers with Rare Disease   

Living with a rare disease is often accompanied by a newfound role of navigating insurance. In this session, we will discuss common insurance barriers faced by patients and caregivers living with a rare disease, and tips to overcome them. This panel incorporates several unique perspectives for every step in your journey that you won’t want to miss! 

11:00 am - 11:15 am

Networking Break

11:15 am - 12:00 pm

Breakout Sessions

Room A: Newborn Screening in America 

Newborn screening is a public health program that screens newborns for certain rare disorders that can affect a child’s long-term health or survival. Newborn screening ensures that babies are identified with these conditions early, allowing treatment to prevent some of the serious health problems associated with them. States determine which conditions are included in their newborn screening programs, but all states screen for most of the 36 conditions on the Recommended Uniform Screening Panel (RUSP). Because states are not required to follow the RUSP, many American families experience access challenges and inequities. Join us to discuss newborn screening in America today and what can be done to advocate for change and equity for all families in the U.S. 

Room B: Sexual and Reproductive Health Issues in Rare Disease 

People living with rare disorders encounter unique obstacles around sexual and reproductive healthcare.  They may not be perceived as sexual beings, or other concerns about their condition are prioritized over sexual health, leaving conversations about sexual and reproductive health and decision-making too often overlooked.  This session will explore challenges and offer strategies for accessing equitable sexual and reproductive healthcare.   

12:00 pm - 1:40 pm


12:15 pm - 1:30 pm

Networking Lunch & Community Conversations

1:40 pm - 2:25 pm

Breakout Sessions

Room A: The Benefits and Limitations of Genetic Testing 

Genetic testing is often part of the diagnostic workup for people with rare and undiagnosed diseases. Genetic counselors help patients and families understand which genetic tests are appropriate for them, why they can be helpful and how to interpret possible results. This session will provide an overview of the genetic testing process. 

Room B: Finding Purpose Despite the Pain 

Living with a rare disease is often isolating and can be accompanied by a constant wave of emotions. Join us to hear from members of the rare community about how they’ve taken “rare action” in their own ways to find new or renewed purpose while living rare and living stronger, despite the pain and obstacles they’ve faced. 

2:25 pm - 2:50 pm

Networking Break

2:50 pm - 3:35 pm

Rare Breakthroughs in Research and Care

New innovations are advancing the diagnosis, treatment and care of people living with rare diseases.  In this session, physician-researchers will share newly available treatment options and their impact and discuss how current research and technologies may benefit the rare disease community in the future.   

3:35 pm - 3:55 pm

How to Get Involved with NORD and the Rare Community

3:55 pm

Closing Remarks

4:00 pm

Program Concludes