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), Derek Kilmer (D-WA), and Debbie Dingell (D-MI) introduced a resolution to recognize September 30, 2024 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.

"Cancer does not discriminate, it has impacted all of us in some way," said Rep. Mike Kelly. "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. I thank my House Cancer Caucus colleagues for joining me in this effort."

"Far too many families have been touched by cancer. And, unfortunately, one in five people living with cancer has a rare cancer," said Rep. Derek Kilmer. "In recognition of Rare Cancer Day, I'm proud to co-sponsor this bipartisan resolution highlighting the challenges facing folks living with rare cancer and committing to ensuring rare cancers get the research funding needed to find cures. It's essential that Congress does its part to invest in cancer research and raise awareness for the millions of Americans who are battling cancer."

"Every year, over 400,000 Americans are diagnosed with a rare form of cancer," said Rep. Brian Fitzpatrick. "Together with my colleagues in the House Cancer Caucus, we are determined to raise awareness for early detection and make sure that every individual fighting these relentless and often overlooked cancers is recognized, supported, and never forgotten. This bipartisan resolution is a step toward that goal, standing in solidarity with those patients and their loved ones."

"We all have been touched by the heartbreak borne from cancer, be it a friend, a parent, a child, a neighbor, even ourselves. As a cancer survivor myself, I know how vital it is to have the tools to detect cancer early and have access to lifesaving treatments," said Rep. Debbie Wasserman Schultz. "With the resources available in the United States, we must carry the banner on advancing research for rare cancers, offering hope to children and families everywhere. I am proud to help lead this important Resolution with my House Cancer Caucus colleagues to highlight the importance of discovering new treatments and creating more 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," Rep. Debbie Dingell said. "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."

"We applaud the 2nd annual congressional recognition of Rare Cancer Day. This resolution is significant and helps us raise awareness, educate and activate all key constituencies for 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).

"Rare Cancer Day is an excellent opportunity for all rare cancer stakeholders to come together to raise awareness, support innovative research and foster collaborations. We are grateful for this resolution, which is a critical step in uniting the entire rare cancer community towards the common goal of developing effective treatments for all patients facing rare cancers." said Jim Palma, CEO, TargetCancer Foundation; Founding Co-Chair, NORD Rare Cancer Coalition.

"Rare cancers often don't receive the attention or resources they need, but through collaboration and advocacy, we can drive real progress for patients. We're committed to working alongside patients, researchers, and lawmakers to ensure that rare cancers get the focus they deserve,' said Rosh Dias, MD, Chief Medical Officer at Coherus. "We will continue to focus on developing new treatments such as our immunotherapy for the treatment of nasopharyngeal carcinoma, to offer hope to those battling these diseases."