Advocates Highlight Challenges Facing 1 in 4 Cancer Patients Diagnosed with a Rare Cancer
WASHINGTON, D.C. and NORWELL, Mass., September 23, 2026 – Patients, caregivers, advocates, and clinicians joined the National Organization for Rare Disorders’ (NORD®) Rare Cancer Coalition® (RCC) on Capitol Hill today to call attention to the diagnosis, research and treatment challenges facing the 1 in 4 cancer patients diagnosed with a rare cancer in the United States. During the advocacy day lawmakers were called on to support essential funding for the National Cancer Institute and the Rare Cancers Research Program.
Rare cancers, which include all pediatric cancers, can present distinct challenges because of small patient populations, limited research and treatment options, and barriers to timely diagnosis such as limited physician familiarity, symptoms that mimic more common conditions, delays in obtaining appropriate pathology or molecular/biomarker testing and more. Despite accounting for a quarter of all cancer diagnoses and deaths in the United States, rare cancer research remains severely underfunded and understudied compared to common cancers.
During today’s meetings with lawmakers, rare cancer advocates highlighted the importance of an annual $17.5 million congressional earmark for the Rare Cancers Research Program overseen by the Department of Defense Congressionally Directed Medical Research Program (CDMRP) and asked for Congress’s continued support to enable clinically impactful discoveries for patients.
Throughout the day, advocates met with ten congressional offices representing rare cancer patient and research constituencies in Colorado, Massachusetts, Maryland, Michigan, and Virginia to share their experiences and advocate for continued federal investment in cancer research.
Participants included Michael Beard, NORD VP of Federal and Global Public Policy, four clinicians from Children’s National Hospital’s Pediatric Cancer Genetics Clinic, and six members of the NORD Rare Care Coalition including: Jim Palma, Chief Executive Officer of TargetCancer Foundation; Kristen Palma, President of TargetCancer Foundation; Jeffery Kramer, President of the Chondrosarcoma Foundation; Ben Wilson, Chair of Community Engagement for the Bloom Syndrome Association; Elizabeth Accad, Community Engagement Manager of the Cutaneous Lymphoma Foundation; Janet Thompson, Executive Director of VHL Alliance.
“Too many families impacted by rare cancer endure a long path to diagnosis, often seeing multiple providers, struggling to find specialists with experience in their cancer and facing delays in specialized testing, only to discover that treatment options may be limited,” shared Pam Gavin, Chief Executive Officer of NORD. ”I am proud of the NORD Rare Cancer Coalition advocates who brought their experiences to Capitol Hill today to urge Congress to increase funding for the National Cancer Institute and advance rare cancer research.”
“Rare Cancer Day is a day to recognize a community of patients and families who are too often overlooked while acknowledging their unique challenges and needs. And it is a day to commit to action. I remember how isolated, devastated and terrified we felt when we learned that my 38-year-old husband Paul’s cancer was rare and had no treatment options. Rare Cancer Day did not exist then, there was not a community for us to turn to, and dollars were not being spent to discover treatments for a cancer like his. The discoveries made through grants supported by the Department of Defense CDMRP Rare Cancer Program are directly impacting patients today, giving time to families that we never had. We have come so far since then and cannot let that momentum slow down, even for a moment,” said Kristen Palma of Cambridge, Mass.
The work continues next month at NORD’s 2026 Rare Disease & Orphan Products Breakthrough Summit®, where more than 900 rare disease stakeholders will convene in Washington, D.C., to address shared challenges in diagnosis, research, drug development and access to care, including those facing people with rare cancers.
About the NORD® Rare Cancer Coalition® (RCC) and Rare Cancer Day:
Formalized in 2017, the Rare Cancer Coalition is a program under the NORD Membership umbrella that brings together 30 rare cancer-specific patient advocacy organizations to improve outcomes for rare cancer patients through awareness, research, education and advocacy efforts. Established by the Rare Cancer Coalition in 2019, Rare Cancer Day annually brings together the rare cancer community to raise awareness of the challenges facing patients and families and advance progress in research, earlier diagnosis and treatment. Beginning in 2026, Rare Cancer Day is recognized on September 23, moving from its previous observance on September 30.
About the National Organization for Rare Disorders (NORD®):
Founded in 1983, the National Organization for Rare Disorders (NORD®) is the leading independent, nonpartisan, nonprofit organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy.
NORD Media Contact:
Cheryl Herbert, 719-330-4053, [email protected]
