Dr. Brigitte Widemann’s appointment as Special Advisor on Childhood Cancer to NCI Director, Dr. Ned Sharpless was announced at the February meeting of the National Cancer Advisory Board (NCAB). As a practicing pediatric oncologist, Dr. Widemann will advise Dr. Sharpless on opportunities in childhood cancer research and current gaps in treatment. Watch this video of Dr. Sharpless and Dr. Widemann discussing childhood cancer research to learn more about Dr. Widemann’s perspectives. Learn more about Dr. Widemann and her research here.

On April 24-25^th, 2022, the Fibrolamellar Cancer Foundation (FCF) will hold its first Fibrolamellar Patient and Research Summit in Greenwich, Connecticut. Fibrolamellar carcinoma (FLC), also called fibrolamellar hepatocellular carcinoma, is a rare liver cancer that usually affects young adults under 40 years old with otherwise healthy livers. The summit will bring together fibrolamellar patients, caregivers, researchers, and clinicians with the aim of sharing and discussing overall FLC research priorities. This highly interactive meeting will include presentations, panels, and round table sessions where participants will learn about recent research advancements, share perspectives and identify opportunities for closer stakeholder collaboration. MyPART Executive Director, Dr. Abby Sandler, will join the summit. “We look forward to bringing representatives of the entire fibrolamellar community together in this event,” says John Hopper, President of FCF. “Bringing patients together with key research partners like Dr. Sandler is critical to increasing patient participation in the research process and accelerating the development of effective treatments.” MyPART is excited to have the opportunity to participate in the summit and engage in these patient-centered rare cancer research discussions. Learn more about the disease, related webinars, and other programs offered by FCF here.

Dr. Jaydira Del Rivero was invited to speak on neuroendocrine tumors, specifically pheochromocytomas and paragangliomas, to the Los Angeles Carcinoid Neuroendocrine Tumor Society in a virtual event on February 17^th. She spoke specifically about advanced and metastatic disease. Watch the recording here. Dr. Del Rivero was also featured in a recent interview article by the NCI Center for Cancer Research, along with one of her patients. Read the article here. The MyPART team believes that engaging with advocacy organizations is fundamental to engaging patients and making advancements in rare tumor research. Learn more about the MyPART team here.

• NIH Rare disease day at NIH was held virtually again this year on February 28^th, 2022. Different stakeholders in rare diseases, including researchers, physicians, the Food and Drug Administration, pharmaceutical companies, and most importantly, patients and families, attended the event. Sessions covered a wide variety of topics, including diversity in clinical research, advocacy collaboration to improve clinical trial enrollment, and how natural history studies may lead to novel treatments. Patient stories continued to be a main feature of the event, highlighting that progress cannot be made without patient participation and contributions to clinical research. Find the list of panelists and speakers here.
• The Children’s Cancer Foundation (CCF) is calling for abstracts for their 6^th annual research symposium, to be held on June 8^th, 2022 in Greenbelt, MD. CCF invites investigators in the MD, VA, and DC area to submit abstracts for a poster or oral presentation by March 20^th, 2022. Learn more about the conference and abstract requirements here.
• Dr. Jaydira Del Rivero’s portrait is featured in the NIH Clinical Center as part of the NIH UNITE initiative’s Power of an Inclusive Workplace Recognition Project. The project aims to display portraits of NIH physicians and researchers to reflect the diversity of the NIH workforce. The NIH UNITE initiative was created to identify and address structural racism within the NIH-supported and greater scientific community. Read more about the NIH UNITE initiative here.