The Alliance at the NORD Summit 2025: Connecting, Navigating, and Raising Awareness for Rare Diseases and Cancers

This October, the Abdominal Cancers Alliance joined advocates, researchers, policymakers, and patient leaders from across the country at the NORD Breakthrough Summit 2025 in Washington, D.C. Hosted by the National Organization for Rare Disorders (NORD), the Summit brings together the rare disease community to share insights, build relationships, and drive collaboration toward better outcomes for all rare disease patients.

Connecting Across the Rare Disease Landscape

For the Alliance, the NORD Summit is more than a conference — it’s a space to connect with others who share our mission of improving the lives of people affected by rare and complex conditions. Our team met with other representatives from rare disease organizations, advocacy groups, and research institutions to exchange experiences, identify shared challenges, and explore opportunities for partnership. These conversations strengthen our collective ability to elevate patient voices and advance access to care.

Building Awareness and Collaboration

Awareness is the first step toward change. Our participation in the NORD Summit reaffirmed the importance of collaboration between rare disease and rare cancer communities. By aligning efforts across these interconnected spaces, we can better promote earlier detection, equitable access to specialized care, and increased research investment for rare cancers.

Navigating the Evolving Rare Cancer Space

Rare cancers are a vital part of the rare disease landscape — and navigating them often presents unique barriers. By participating in the Summit, the Alliance engaged with experts and fellow advocates to explore how national policies, clinical trials, and emerging therapies can better support patients with rare abdominal cancers. Through breakout discussions and networking events, we identified trends and strategies that will help patients and families more effectively navigate diagnosis, treatment, and survivorship.

Looking Ahead

The insights and relationships gained at NORD Summit 2025 will continue to inform the Alliance’s work in the months ahead. As we build on new partnerships and shared goals, we remain committed to helping patients and caregivers find their way — through information, connection, and advocacy.

Together, we’re charting a clearer path forward for those navigating rare diseases and rare cancers.

For more information about NORD's Summit 2025, read here.