September is Childhood Cancer Awareness Month and an opportunity to highlight the efforts being undertaken to advance therapies for childhood cancers. All childhood cancers are considered rare, and as a result, come with the host of challenges that plague rare cancer research: lack of available models for testing potential treatments, difficulty accruing for clinical trials, and siloed data that prevents collaboration and slows innovation. NCI’s MyPART and the Childhood Cancer Data Initiative (CCDI) are working to combat these challenges through data collection and coordinated efforts to advance research on childhood cancers and rare cancers. MyPART coordinates the Natural History Study of Rare Solid Tumors, which has a focus on pediatric, adolescent, and young adult patients with rare solid tumors, and coordinates rare tumor clinics. Rare tumor clinics bring patients and families together with experts in rare tumors to the NIH Clinical Center and provide comprehensive, multidisciplinary care in an effort to learn more about these tumors and improve patients’ quality of life. The CCDI Molecular Characterization Initiative, a collaborative effort with the Children’s Oncology Group, enrolls children with newly diagnosed cancers and performs clinical and molecular characterization of cancers at no cost to patients. A webinar discussing this effort and its progress will be held September 10^th (register for the virtual event here). 

Further, each principal investigator in the NCI CCR Pediatric Oncology Branch is focused on advancing therapies and improving the lives of children and young people with cancer. The Branch’s diverse expertise spans the research landscape from basic to translational to clinical research, and includes efforts in immunotherapy, medical oncology, bioinformatics, and psychosocial support. Every month is Childhood Cancer Awareness Month here in POB!

Learn more about Childhood Cancer Awareness Month here.

MyPART physician and PI of MyPART’s Natural History Study, Dr. Mary Frances Wedekind, was a guest on the most recent episode of NCI Cancer HealthCast podcast. She discusses NCI’s Coordinated Pediatric and Adolescent and Young Adult Rare Cancer Initiative, a national effort coordinated through NCI’s Childhood Cancer Data Initiative. She explains that the data collected through these CCDI efforts will not only help the research community learn more about childhood cancers but can serve as an external control for new clinical trials – important data needed to determine if therapies are working.

“Collaboration is of the utmost importance,” says Dr. Wedekind of the childhood cancer space. She continues, “We really have to come together as an entire community to make impactful differences in the lives of these children, adolescents, and young adults with cancer, and in particular, for these rare cancers [where] resources are lacking.”

Listen to the podcast here.

Check out MyPART advocacy partner TargetCancer Foundation’s new monthly newsletter: On Target! The inaugural issue of On Target went out last month and commemorated TCF’s 15^th anniversary of investing in rare cancer research and advocating for rare cancer patients. Learn more about the foundation and subscribe to receive On Target here.

Learn more about MyPART’s advocacy partners here.

• Sep 10^th: NCI CCDI Webinar “Impact of the Molecular Characterization Initiative on Pediatric CNS Tumors.” This webinar will discuss the CCDI Molecular Characterization Initiative, which launched in 2022, and its progress in characterizing central nervous system tumors. Register for the virtual event here.
• Sep 30^th: Rare Cancer Day. Originally launched by the National Organization for Rare Disorders (NORD) and its Rare Cancer Coalition, Rare Cancer Day is an opportunity to spread awareness of the unique challenges and ongoing opportunities to improve care for people with rare cancers.
• Oct 20-22^nd: National Organization for Rare Disorders (NORD)Breakthrough Summit, Washington, D.C. The annual NORD Breakthrough Summit brings rare disease patients, families, advocates, and researchers together with government representatives, pharmaceutical companies, and other stakeholders in the rare disease community. Learn more about the Breakthrough Summit here. MyPART partners with NORD's Rare Cancer Coalition. 
• Nov 20^th: TargetCancer Foundation’s Think Tank on Advancing Precision Medicine in Rare Cancers, Boston, M.A. Details on the agenda and registration for this meeting are coming soon. Learn about previous TCF Think Tank meetings here.