ACCC Supports Congressional Resolution Creating A Rare Cancer Day

We are pleased to share that a bipartisan resolution was introduced in Congress on October 1, 2024 to designate September 30 as Rare Cancer Day. ACCC extends its appreciation to Representatives Mike Kelly (R-PA), Brian Fitzpatrick (R-PA), Derek Kilmer, (D-WA), Debbie Wasserman Schultz (D-FL), and Debbie Dingell (D-MI) for their efforts and support. "Rare Cancer Day" will provide an opportunity to highlight the challenges patients with rare cancers face and to raise awareness and support for efforts to improve early diagnosis and treatment.

As noted in the Resolution, 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. Rare cancers include Myelodysplastic syndromes (MDS). The Association of Cancer Care Centers (ACCC) has developed two separate initiatives which aim to improve optimization of care in the management of anemia for specific subsets of MDS patients based on risk. These initiatives aim to collect baseline data, develop sustainable interventions and supporting resources that address barriers, and provide resources that support patients and caregivers.

ACCC is proud to stand with NORD Rare Cancer Coalition, Support for People with Oral Head and Neck Cancers (SPONC), Community Oncology Alliance, GI Cancers Alliance, The Raymond Foundation, American Head and Neck Society, NCODA, and other cancer advocacy organizations across the nation in support of this important effort.