The Rare Cancer Research Foundation (RCRF), a non-profit organization founded by ocular melanoma survivor Mark Laabs, is dedicated to building and supporting rare cancer research programs through collaboration and innovation. By establishing a research infrastructure, RCRF facilitates access to resources and allows researchers to focus on discovery. RCRF partners with numerous rare cancer organizations, including 6 organizations that are also MyPART advocacy partners. Current research projects include Pattern.org, RCRF's online initiative which enables rare cancer patients to donate fresh tumor tissue to research. RCRF and Pattern.org coordinate with the patient’s surgical team to have the fresh, non-frozen tissue transferred into the hands of researchers within hours of surgery. This effort is important because certain experiments require fresh tissue and cannot be performed with frozen tissue or slides. With the mission to “enable cancer research,” RCRF is well-suited to join the MyPART Network as an advocacy partner and work towards improving the lives of people with rare tumors. Barbara Van Hare, RCRF's Director of Partnerships, says "RCRF is thrilled to partner with MyPART which shares the common goal of accelerating research to find new therapeutic options for those living with rare cancers!"

Learn more about MyPART's advocacy partners here.

On October 17-18^th, the National Organization for Rare Disorders (NORD) hosted its annual Rare Diseases and Orphan Products Breakthrough Summit in Washington, DC. Several members of the MyPART team attended, including MyPART Psychologist, Dr. Robin Lockridge. Dr. Lockridge participated in a panel discussion on mental health and rare cancers alongside MyPART advocacy partners Jim Palma (TargetCancer Foundation) and John Hopper (Fibrolamellar Cancer Foundation). Jim Palma and John Hopper also co-lead NORD’s Rare Cancer Coalition, which organized the panel. Young adult fibrolamellar cancer survivor, Kielan Wilson-Premo, and social worker Jessica Thomas, LCSW (Neuroendocrine Tumor Research Foundation), also participated in the panel. Dr. Lockridge discussed the unique challenges that adolescents and young adults (AYAs) face when navigating cancer, and Kielan shared his own personal experience. Dr. Lockridge shared resources available through the NIH and NCI for AYAs with cancer and their caregivers. She also touched upon MyPART’s Natural History Study of Rare Solid Tumors and the importance of collecting patient-reported outcomes to better understand the mental health needs of AYAs experiencing cancer and to improve outcomes.

• The 2022 NCI Pediatric and Young Adult Chordoma Clinic successfully took place the week of October 24^th. A total of ten patients with chordoma from around the world participated in the clinic, including five patients who were able to travel to the NCI to be evaluated by the MyPART team and various consultants. Patient cases were reviewed by a team of multidisciplinary experts from across the country and treatment recommendations were relayed back to patients and their families. This annual clinic continues to be a rewarding experience for patients, experts, and the MyPART team while allowing the expansion of knowledge on this very rare disease. We are grateful to the team of experts and consults that participated, but most importantly, the patients and families, without whom, none of this would be possible. We look forward to planning the 4^th annual chordoma clinic for the spring of 2023. Read about the 2019 Inaugural Chordoma Clinic here.
• Selumetinib (Koselugo) is now approved in Japan to treat children ages 3 years and older with Neurofibromatosis Type 1 and inoperable plexiform neurofibromas. Selumetinib is the first approved therapy to treat children with these rare nerve tumors.
• MyPART psychologist and Head of the Pediatric Oncology Branch’s Health Psychology and Neurobehavioral Research Program, Pam Wolters, was featured in the Childhood Cancer Data Initiative’s Community Stories on October 12^th, 2022.
• Jim Palma, Executive Director of TargetCancer Foundation, a MyPART partner, received the Ruesch Center 2022 Luminary Award for GI Cancers. Congratulations, Jim!

• November is National Carcinoid Tumor Awareness Month. Carcinoid tumors are neuroendocrine tumors that can from in various locations throughout the body. MyPART studies carcinoid tumors. Learn more about carcinoid tumors here.
• November is National Stomach Cancer Awareness Month. MyPART studies rare tumors of the gastrointestinal tract. Learn more about rare digestive system tumors here.
• November is National Family Caregivers Month. Access support resources for caregivers of children, adolescents, and young adults experiencing cancer on the MyPART website here.
• Nov 2^nd: The Childhood Cancer Data Initiative (CCDI) virtual workshop, “The Importance of EHR Data in Clinical Care and Research.” The workshop, held from 10:00am to 3:30pm ET, will bring together physicians, researchers, and other stakeholders with scientific and technical expertise in EHR to discuss challenges and identify the opportunities to use EHR data in childhood cancer research. Register for the workshop here.
• Nov 10^th: World Neuroendocrine Tumor Awareness Day. Neuroendocrine tumors, or NETs, are tumors that form from the cells that send hormones in the body. MyPART studies NETs. Learn more about neuroendocrine tumors here.
• Nov 10^th: National Genetic Counselor Awareness Day. MyPART’s genetic counselor, Dr. Margarita Raygada provides her services to patients on the MyPART Natural History Study of Rare Solid Tumors, as well as studies for the NCI-CONNECT program. Thank you, Dr. Raygada! Learn more about genetic counseling here.
• Nov 13-19^th: National Nurse Practitioners Week. MyPART is grateful for our nursing staff and the excellent care they provide to all of our patients and families. Thank you nurse practitioners!
• Nov 17-18^th: TargetCancer Foundation will host a two-day think tank on advancing esophageal cancer research in Boston, MA. Learn more and register for the think tank here.