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The Rare Cancer Coalition, formed in 2017 under the National Organization for Rare Disorders (NORD) membership umbrella, facilitates collaboration among NORD member organizations focused on rare cancers. The Rare Cancer Coalition aims to spread awareness of rare cancers through publications for the medical community and provide education to patients and caregivers. The organization also created Rare Cancer Day, observed globally on September 30th, to raise awareness about the unique challenges faced by the rare cancer community. NORD’s Rare Cancer Coalition has a presence at prominent conferences, including the American Society of Clinical Oncology (ASCO) Annual Meeting and the National Institutes of Health (NIH) Rare Disease Day.
In addition to the Rare Cancer Coalition’s collaborations to promote awareness, the organization supports its member organizations through unique resources offered through NORD. NORD’s support resources include information on how to grow your advocacy organization, engage with researchers, find clinical trials, and more. NORD also hosts the IAMRARE Program, which allows advocacy organizations to create their own patient registries using NORD’s online platform. The IAMRARE Program was launched with input from the NIH, the US Food and Drug Administration, experts in rare diseases, and importantly, patients and families. Through the IAMRARE Program, advocacy organizations can play a direct role in informing medical research by providing registry data collected from their own communities. Several MyPART partners who are also NORD Rare Cancer Coalition members have launched their own registries through this program, including the Desmoid Tumor Research Foundation and the Chondrosarcoma Foundation.
The NORD Rare Cancer Coalition is led by Jim Palma, Executive Director of the TargetCancer Foundation and John Hopper, President Emeritus of the Fibrolamellar Cancer Foundation, both of which are MyPART advocacy partners. MyPART is proud to welcome NORD’s Rare Cancer Coalition as an advocacy partner with the shared mission of improving the lives of people with rare cancers. Learn more about MyPART’s advocacy partners here.
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Several members of the MyPART team and the NCI Center for Cancer Research, Pediatric Oncology Branch (POB) participated in the Childhood Cancer Data Initiative (CCDI) Annual Symposium, held March 24-25th 2023 on the NIH Campus in Bethesda, Maryland. The CCDI is accelerating discoveries in childhood cancer through data sharing and the creation of innovative resources with the goal of learning from every child with cancer. The symposium brought together experts in pediatric oncology and data science, researchers, clinicians, advocates, and patients and family members. Osteosarcoma survivor Hanna Jorgenson kicked off the meeting by sharing her childhood cancer journey and highlighting the power of harnessing data to diagnose, treat, and understand pediatric and young adult cancers more effectively.
MyPART co-leader and POB Chief, Dr. Brigitte Widemann, led a session and panel discussion entitled “Accelerating Clinical Trials in Childhood Cancer.” Panel discussion members, including POB Assistant Research Physician Dr. Srivandana Akshintala, discussed the challenges and opportunities to improve clinical trial design for pediatric patients. MyPART physician and Principal Investigator of the Natural History Study of Rare Solid Tumors, Dr. Mary Frances Wedekind, presented the proposal for a “National Initiative for Rare Cancers in Children, Adolescents, and Young Adults,” (AYA) and discussed opportunities to leverage CCDI data and resources to build a national research infrastructure to study rare cancers in children, teens, and young adults. Dr. Wedekind also led the breakout session, “Observational studies and novel interventional approaches for rare pediatric cancers,” where experts came together to begin discussions on a framework and strategy for this national initiative. Dr. Wedekind and POB investigator Dr. Troy McEachron participated in the panel discussion, “CCDI Work in Progress and Future Directions.” Several POB staff members also contribute to CCDI efforts through participation in CCDI working groups.
The CCDI Annual Symposium was a great opportunity to highlight progress already made and discuss the still unmet needs of patients with childhood and AYA cancer. Learn more about CCDI here.
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Rare Disease Day at NIH – video now available. At Rare Disease Day at NIH in February 2023, MyPART Executive Director Dr. Abby Sandler hosted a panel discussion, “Meeting the Needs of Adolescent and Young Adult (AYA) Rare Disease Patients.” Watch a recording of the panel discussion here (beginning at 2 hours 11 minutes and ending at 2 hours 52 minutes). Read a summary of the panel discussion here.
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New on the MyPART website: 4th Annual Olfactory Neuroblastoma (ONB) Patient Education Meeting Recording. This video of the most recent ONB patient education meeting, hosted by MyPART collaborator Dr. Nyall London, highlights the latest advances in ONB research and treatment. Learn more about ONB and view previous patient education meetings, including one meeting for Spanish speaking viewers, here.
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Meet Datum and learn how NCI is bringing data to life. This video, created by NCI’s Center for Biomedical Informatics and Information Technology, follows the life of Datum, a cartoon piece of cancer data, from how it was first created to how it contributes to the understanding of cancer! Watch here. Learn more about the data MyPART is collecting and how MyPART is addressing challenges in rare cancer research here.
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