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The Natural History of Rare Solid Tumors, which began enrollment in January 2019, has enrolled 476 patients as of the end of August 2022! The study, which includes patients from all over the world, is open to all people who have or had a rare solid tumor, as well as their family members. View the statistics below to learn how participants break down by diagnosis and age at enrollment. Currently, study participants represent 6 continents, 21 countries, and 45 US states, plus Washington DC and Puerto Rico. Tumors with only one or two participants enrolled are labelled N=1 and N=2, respectively. Collecting data on rare tumors can make a difference and accelerate our understanding of how these tumors grow and develop over time. Learn more about the study, what samples and data we collect, and how to participate here.
The TargetCancer Foundation, a MyPART advocacy partner, will host a Think Tank on Advancing Precision Medicine in Rare Cancers on September 21st in Boston, MA. The meeting will kick off with a Patient Keynote and Scientific Keynote, followed by sessions on clinical trials, germline and somatic genetics, biomarkers and emerging technologies, patient driven data discovery, and a panel discussion on the challenges of adopting biomarker testing. Members of the MyPART team, MyPART partners, and other experts in rare cancer research will be in attendance.
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The Sarcoma Coalition, a group of 30 sarcoma advocacy organizations, continues to expand its reach and work together for the greater good of sarcoma patient communities. Sarcomas are rare cancers that grow in the bones and soft tissues of the body, such as muscles, fat, and other connective tissue. The Sarcoma Coalition, established in 2018, is focused on common ground issues faced by sarcoma patients, families, and caregivers. The Coalition believes collaboration is key to solving sarcoma, which aligns with MyPART’s mindset that we all need to work together to accelerate advancements for patients with rare tumors.
Sarcoma diagnoses are complex, and misdiagnoses are high compared to other more prevalent cancers. A significant issue for sarcoma patients is not receiving correct treatment therapies in a timely manner, which impacts overall survival. MyPART and the NCI CCR Pediatric Oncology Branch staff have a well-established interest in sarcomas and have strong clinical and research programs studying these tumors. MyPART currently partners with 12 sarcoma organizations, many of whom are also a part of the Sarcoma Coalition.
The Sarcoma Coalition supports research, develops educational programs, and amplifies the voices of each sarcoma advocacy organization within the coalition. The Coalition’s patient advocacy network coordinates the “Golf Ball Project,” an initiative to alert community medical providers to be mindful of lumps and bumps up to the size of a golf ball and raise awareness: could it be sarcoma?
The US Food and Drug Administration is currently providing the Coalition with informational resource updates on its newest initiatives to support the sarcoma patient community as well as the patient advocacy community. These include Project Community, The Oncology Center of Excellence, Project Optimus, Project Facilitate (a support resource for physicians and oncologists), Project Significant: Statistics in Cancer Trials, and more.
The Coalition’s Advisory Panel provides resources and guidance for the Coalition’s Steering Committee and members as projects develop. Learn more about the Sarcoma Coalition’s accomplishments here and contact the Sarcoma Coalition here for more information.
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September 14th-16th: The NIH Annual Pediatric and Wild-type GIST Clinic. The GIST Clinic will be held in hybrid format (both virtual and on campus at the NIH Clinical Center in Bethesda, Maryland). Learn more about the GIST Clinic here.
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September 29th: Rare Cancer Day - Functional Precision Cancer Medicine Webinar: hosted by MyPART partners, Fibrolamellar Cancer Foundation, TargetCancer Foundation, and Angiosarcoma Awareness, Inc. This webinar is the second in a series of four webinars exploring how precision medicine strategies are being applied to rare cancers, featuring experts in the field of precision medicine and rare cancers. Learn more and register here.
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October 1st, 2022: The Anal Cancer Foundation’s Second Annual Patient Conference. This virtual event features medical experts and patients sharing information and their experiences with one another. Learn more about the event and register here.
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October 17-18th, 2022: National Organization for Rare Disorders (NORD) Breakthrough Summit. NORD’s Breakthrough Summit, held annually, brings together stakeholders in rare diseases, including patients, advocates, regulators, researchers, doctors, and more, to discuss important topics in rare disease research, treatment, and care. The event will be held in person this year. Learn more here.
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October 27th: The Pediatric and Young Adult Chordoma Clinic. The Chordoma Clinic will be held in hybrid format and will connect chordoma patients ages 39 years and younger with experts in chordoma from all over the country. The clinic offers patients an opportunity to receive treatment recommendations and gives chordoma experts an opportunity to discuss research findings and updates in chordoma treatment and care. More information about this upcoming clinic will be available soon. Learn more about the 2019 Chordoma Clinic here.
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