Kelly, colleagues introduce resolution to recognize Rare Cancer Day
WASHINGTON, D.C. -- Today, U.S. Representatives Mike Kelly (R-PA), Brian Fitzpatrick (R-PA), Debbie Wasserman Schultz (D-FL), and Debbie Dingell (D-MI) introduced a resolution to recognize September 30, 2025 as Rare Cancer Day.
Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis. Approximately 1 in 5 Americans living with cancer are diagnosed with a rare cancer. Additionally, all pediatric cancers are considered rare, according to the National Organization for Rare Disorders (NORD), meaning 15 million children in the United States are living with rare cancers.
Examples of rare cancers include: Cholangiocarcinoma, Nasopharyngeal carcinoma (NPC), Myelodysplastic syndromes (MDS), Ocular Melanoma, Fibrolamellar carcinoma (FLC), Medulloblastoma, sarcomas and all pediatric cancers.
"Today, we recognize Rare Cancer Day to raise awareness and support research that will work toward a brighter tomorrow for all Americans who are battling cancer," said Rep. Kelly. "I thank my House Cancer Caucus colleagues for joining me in this effort. It's important to remember that cancer does not discriminate. It has impacted all of us in some way."
“Every year, hundreds of thousands of Americans are diagnosed with rare cancers that remain amongst the hardest to detect, most difficult to treat, and most chronically underfunded. Together, with my colleagues in the bipartisan House Cancer Caucus, we are working to bring these diseases out of the shadows by advancing early detection, driving cutting-edge research, and ensuring every patient and family confronting a rare cancer has access to the care and support they need. This resolution underscores our commitment to ensure that no diagnosis is ever too rare for attention, resources, or hope,” said Rep. Fitzpatrick.
As a cancer survivor, I know how vital it is to have the tools to detect cancer early and have access to lifesaving treatments. With the resources the United States offers, we must lead the way to advance research for rare cancers and offer hope to families everywhere,” said Rep. Wasserman Schultz. “I'm proud to help lead this Resolution with my House Cancer Caucus colleagues to put a spotlight on the importance of new treatments and pathways to preventive care.”
“Cancer is the second leading cause of death in the United States, and nearly every family has been touched by cancer in some way. Rare cancers pose an especially difficult challenge to patients, and their families and friends. I’m proud to join my colleagues in recognizing Rare Cancer Day, to stand united with all those dealing with a rare cancer diagnosis and those who have lost loved ones, and recommit to our efforts to fund research to prevent and treat these diseases," said Rep. Dingell.
WHAT THEY'RE SAYING
"We applaud the 3rd annual congressional recognition of Rare Cancer Day. This resolution is a beacon of hope for the rare cancer community and helps us raise awareness, educate, and activate all key constituencies in addressing the challenges that the rare cancer community faces. We appreciate the efforts of the House Cancer Caucus and join them as we work towards early diagnosis, treatment, and better outcomes for rare cancer patients,” said John Hopper, Founder Patient Activation Group, Co-Chair NORD Rare Cancer Coalition, Advisory Board Director- Fred Hutch Cancer Center, and Board Director of Rare Cancer Foundation-SARC (sarcoma).
“As a rare cancer patient, I’m deeply grateful for the 3rd annual congressional recognition of Rare Cancer Day. This resolution shines a light of hope, amplifying our voices and raising awareness about the unique challenges we face. I stand with the House Cancer Caucus in their efforts to promote early diagnosis, access to treatments, and improved outcomes for our community,” said Floyd Stewart, Nasopharyngeal Cancer (NPC) Patient.
“A cancer diagnosis is deeply concerning, with rare cancers in particular deserving far greater resources and focus," said Rosh Dias, MD, Chief Medical Officer at Coherus Oncology. "We are committed to collaborating with cancer patients, researchers, clinicians, and policymakers to advance novel cancer therapies through active clinical trials, to bring new hope to those patients affected by nasopharyngeal cancer, and other underserved cancers.”
“Rare Cancer Day is an excellent opportunity to unite the entire rare cancer community, and it has never been more critical to raise awareness of the importance of supporting innovative research that leads to treatments for patients. I am grateful for this resolution, and am hopeful that it will help to illuminate the urgent challenges and needs that are consistent across all rare cancers," said Jim Palma, CEO, TargetCancer Foundation; Founding Co-Chair, NORD Rare Cancer Coalition.