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The My PART (My Pediatric and Adult Rare Tumor) Network, coordinated through the National Cancer Institute (NCI) Center for Cancer Research (CCR), was established to bring together patients, their family members, healthcare providers, patient advocates, and researchers to work together to find treatments for rare cancers affecting children, adolescents, and young adults.

My PART runs the Natural History Study of Rare Solid Tumors. This study follows people of all ages with rare solid tumors over the course of their disease to learn about how these tumors develop and to discover treatments. Participants are asked to provide a saliva sample, fill out questionnaires on their medical history and their family’s medical history, and fill out surveys about how living with a rare tumor affects aspects of their life. To learn more about the Natural History Study and how to participate, email NCICCRRareTumorClinic@mail.nih.gov and visit the My PART website at www.cancer.gov/MyPART .

Since the Natural History Study of Rare Solid Tumors began enrollment in January 2019, over 400 participants have joined the study over the last 3 years in an effort to advance our knowledge about rare solid tumors. Importantly, MyPART’s progress in rare tumor research would not be possible without the participation of our patients and their families. In this anniversary video, we also share our research progress to date and the unique perspectives from two young adult study participants. Learn about why they chose to participate in cancer research and how they have navigated their cancer journeys.

My PART also:

  • Hosts rare tumor clinics at the NIH Clinical Center to bring patients with a specific rare tumor together with advocates and expert healthcare providers so they can learn more about the tumor from each other.
  • Holds workshops for researchers and clinicians to help them share their research, focus their studies, and design clinical trials.
  • Formally partners with patient advocacy organizations to facilitate the exchange of information between patients, healthcare providers, and researchers.

The Paula Takacs Foundation is a proud Advocacy Partner of the My Part program.