WASHINGTON, D.C. and NORWELL, Mass. — Patients, caregivers, medical advocates, and clinicians converged on Capitol Hill to draw urgent national attention to a stark reality of modern medicine: one in four cancer patients in the United States is diagnosed with a rare cancer. Representing the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition® (RCC), the delegation used the occasion to call on federal lawmakers for robust, sustained funding for the National Cancer Institute and dedicated rare cancer research programs.
The advocacy day brought a deeply personal human element to the halls of Congress, echoing the collective struggles of millions of Americans navigating illnesses that often lack established pathways for diagnosis and treatment. Rare cancers—a broad classification that encompasses all pediatric cancers—present distinct, formidable challenges for patients and the medical community alike. These hurdles stem from small patient populations, severely limited research investment, and a scarcity of targeted treatment options.
Furthermore, patients frequently encounter systemic barriers to timely diagnoses. These obstacles include limited physician familiarity with rare presentations, symptoms that easily mimic more common conditions, and persistent delays in obtaining appropriate pathology or advanced molecular and biomarker testing. Despite accounting for a striking quarter of all cancer diagnoses and deaths nationwide, rare cancer research remains severely underfunded and understudied when compared to its more common counterparts.
During a packed schedule of meetings with key lawmakers, rare cancer advocates emphasized the critical importance of maintaining an annual $17.5 million congressional earmark for the Rare Cancers Research Program, which is overseen by the Department of Defense Congressionally Directed Medical Research Program (CDMRP). Advocates asked members of Congress for their continued bipartisan support to foster clinically impactful discoveries that can translate into meaningful treatments for patients whose options are otherwise virtually nonexistent.
Throughout the day, participants met with ten congressional offices representing key rare cancer patient and research constituencies across Colorado, Massachusetts, Maryland, Michigan, and Virginia. The delegates shared their lived experiences and underscored the vital necessity of continued federal investment in groundbreaking cancer research.
The prominent delegation featured Michael Beard, NORD Vice President of Federal and Global Public Policy; four specialized clinicians from Children’s National Hospital’s Pediatric Cancer Genetics Clinic; and six core members of the NORD Rare Cancer Coalition. Among the coalition leaders participating were Jim Palma, Chief Executive Officer of the TargetCancer Foundation; Kristen Palma, President of the 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; and Janet Thompson, Executive Director of the VHL Alliance.
Pam Gavin, Chief Executive Officer of NORD, emphasized the daily obstacles faced by families dealing with these complex diagnoses during her remarks on Capitol Hill.
"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," Gavin shared. "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."
For many participants, the fight for increased research funding is deeply personal, rooted in past grief and a fierce determination to change the future for others. Kristen Palma of Cambridge, Massachusetts, reflected on the evolution of advocacy and the stark differences between past decades and today’s scientific landscape.
"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," said Palma. "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."
Palma noted how far the medical and advocacy communities have traveled since those dark days, stressing that the current momentum must be fiercely protected. "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," she added. "We have come so far since then and cannot let that momentum slow down, even for a moment."
The legislative push on Capitol Hill serves as a crucial stepping stone toward broader discussions scheduled for next month. The work will continue at NORD’s upcoming 2026 Rare Disease & Orphan Products Breakthrough Summit®, where more than 900 rare disease stakeholders are set to convene in Washington, D.C. Attendees will address shared challenges spanning diagnosis, research, drug development, and access to care, with a strong focus on the specific hurdles facing individuals diagnosed with rare cancers.
Formalized in 2017, the Rare Cancer Coalition operates as a dedicated program under the NORD Membership umbrella, bringing together 30 distinct rare cancer-specific patient advocacy organizations. Their unified mission is to improve outcomes for rare cancer patients through comprehensive awareness, targeted research, educational initiatives, and concerted advocacy efforts.
Established by the coalition in 2019, Rare Cancer Day annually unites the rare cancer community to elevate public consciousness regarding the multifaceted challenges facing patients and families, while fiercely driving progress in research, earlier diagnoses, and innovative treatments. Beginning in 2026, Rare Cancer Day is officially recognized on September 23, marking a calendar shift from its previous observance on September 30.
Founded in 1983, the National Organization for Rare Disorders remains the leading independent, nonpartisan, nonprofit organization dedicated to improving the health and overall quality of life for more than 30 million Americans living with rare diseases. Working in active partnership with over 350 disease-specific member patient organizations, NORD continues to spearhead vital progress across rare disease research, specialized care, and national policy.
