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MyPART - My Pediatric and Adult Rare Tumor Network

MyPART Advocacy Partners

Patient advocacy groups are important members of the MyPART network. They can help you:

  • Understand your cancer better and what to expect throughout your medical journey
  • Figure out who are the experts for your cancer type and which medical centers treat cancers like yours
  • Connect to other people who have been through similar experiences to what you are going through

Our partners work with us to find patients who may want to join our clinics or trials. They also help us share important information about rare tumors and share resources for patients and their families.

The patient advocacy groups listed below have teamed up with the MyPART network.

Partner Organizations

  • The Chordoma Foundation

    The Chordoma Foundation improves the lives of chordoma patients and their families by funding chordoma research for a cure and providing support to patients and families.

  • Cure Alveolar Soft Part Sarcoma International (iCureASPS)

    Cure Alveolar Soft Part Sarcoma International (iCureASPS) provides patients and families with information about ASPS and hosts patient forums. They also provide summaries on the latest ASPS research and clinical trials.

  • Desmoid Tumor Research Foundation

    The Desmoid Tumor Research Foundation supports and funds research to discover improved treatments, and ultimately a cure, for desmoid tumors.

  • The EHE Foundation

    The EHE Foundation seeks treatments and a cure for epithelioid hemangioendothelioma by increasing awareness, supporting scientific research, advocating for patients, and bridging information between researchers, health care providers and patients.

  • Fibrolamellar Cancer Foundation

    The Fibrolamellar Cancer Foundation seeks to find a cure and treatment options for Fibrolamellar Carcinoma (FLC), raise awareness, and connect and support FLC patients and families.

  • Leiomyosarcoma Support & Direct Research Foundation

    The Leiomyosarcoma Support & Direct Research Foundation supports leiomyosarcoma (LMS) research, organizes LMS conferences for patients and physicians, and supports patients and families affected by LMS.

  • The Life Raft Group

    The Life Raft Group strives to improve survival and quality of life of patients with Gastrointestinal Stromal Tumors (GIST) through patient-powered research, education and support, and international advocacy efforts.

  • National Leiomyosarcoma Foundation

    The National Leiomyosarcoma (LMS) Foundation is dedicated to supporting LMS research through facilitating collaboration. They provide education and support for LMS patients, families, and caregivers.

  • Sara's Cure

    Sara's Cure is a non-profit organization established in 2016 that advocates for research and awareness of clear cell sarcoma, a very rare form of sarcoma.

  • SARC - Sarcoma Alliance for Research through Collaboration

    SARC’s mission is to unite researchers, pharmaceutical companies, and biotech companies in sarcoma research to improve patient outcomes and find a cure for sarcoma.