WASHINGTON, D.C. and NORWELL, Mass. — Marking Rare Cancer Day on September 23, 2026, a coalition of patients, caregivers, medical professionals, and fierce advocates descended upon Capitol Hill. Their mission was clear and urgent: to shine a glaring light on the profound diagnosis, research, and treatment hurdles confronting the one in four cancer patients in the United States who are diagnosed with a rare cancer.
Throughout a packed day of advocacy, participants engaged directly with lawmakers and congressional staff, calling for robust, sustained federal funding for the National Cancer Institute (NCI) and the Rare Cancers Research Program. These initiatives are viewed by the medical and patient communities as critical lifelines for a population that has historically faced systemic neglect in oncology research and drug development.
Rare cancers—a broad category that includes all pediatric cancers—present distinct, often devastating challenges for patients and their families. These diseases are frequently characterized by remarkably small patient populations, severely limited research funding, and a stark scarcity of targeted treatment options. Furthermore, patients encounter formidable barriers to receiving a timely and accurate diagnosis. These barriers include low physician familiarity with rare presentations, symptoms that frequently mimic more common conditions, and persistent delays in obtaining appropriate pathology or specialized molecular and biomarker testing.
Despite the sobering reality that rare cancers account for a full quarter of all cancer diagnoses and deaths in the United States, research into these conditions remains severely underfunded and understudied when compared to more common forms of the disease. This disparity leaves many patients with few, if any, standard-of-care treatment options when they receive their initial prognoses.
During their meetings on Capitol Hill, rare cancer advocates emphasized the vital necessity of maintaining an annual $17.5 million congressional earmark for the Rare Cancers Research Program. This crucial program is overseen by the Department of Defense Congressionally Directed Medical Research Program (CDMRP). Advocates urged members of Congress to maintain their steadfast support to ensure that researchers can continue to pursue clinically impactful discoveries that directly benefit patients in urgent need of therapeutic breakthroughs.
The advocacy efforts spanned ten congressional offices representing key rare cancer patient and research constituencies across Colorado, Massachusetts, Maryland, Michigan, and Virginia. Participants used these meetings to share deeply personal stories, highlight regional research initiatives, and advocate for long-term federal investments in comprehensive cancer research infrastructure.
The delegation on Capitol Hill represented a broad coalition of expertise and lived experience. Participants included Michael Beard, Vice President of Federal and Global Public Policy for the National Organization for Rare Disorders (NORD); four clinicians from the Pediatric Cancer Genetics Clinic at Children’s National Hospital; and six leaders from organizations belonging to the NORD Rare Cancer Coalition.
Among the coalition leaders present were Jim Palma, Chief Executive Officer, and 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 for the Cutaneous Lymphoma Foundation; and Janet Thompson, Executive Director of the VHL Alliance.
Pam Gavin, Chief Executive Officer of NORD, underscored the human cost of these systemic hurdles during the advocacy events.
"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. Kristen Palma of Cambridge, Massachusetts, reflected on her own family’s harrowing journey and the evolution of the rare cancer advocacy movement.
"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," Palma said. "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 emphasized that the federal investments made through specialized programs are already altering the landscape for families facing similar diagnoses today. "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 noted. "We have come so far since then and cannot let that momentum slow down, even for a moment."
The momentum generated on Capitol Hill will carry directly into next month’s events, continuing at NORD’s 2026 Rare Disease & Orphan Products Breakthrough Summit. The upcoming summit is expected to draw more than 900 rare disease stakeholders to Washington, D.C., where they will convene to address shared, systemic challenges in diagnosis, groundbreaking research, drug development, and equitable access to care—including the unique obstacles faced by individuals battling rare cancers.
Formalized in 2017, the Rare Cancer Coalition operates as a specialized program under the NORD membership umbrella, uniting 30 rare cancer-specific patient advocacy organizations. The coalition works tirelessly to improve health outcomes for rare cancer patients through coordinated awareness campaigns, targeted research initiatives, educational programs, and legislative advocacy.
The coalition established Rare Cancer Day in 2019 to annually rally the broader rare cancer community, elevate public awareness regarding the challenges faced by affected patients and families, and accelerate progress toward earlier diagnoses and effective treatments. Beginning in 2026, Rare Cancer Day is officially recognized on September 23, transitioning 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 well-being of the more than 30 million Americans living with rare diseases. Working in active partnership with over 350 disease-specific member patient organizations, NORD continues to drive meaningful progress across the entire spectrum of rare disease research, clinical care, and public policy.
