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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

  • Angiosarcoma Awareness, Inc.

    Angiosarcoma Awareness, Inc. is a non-profit organization dedicated to supporting research to discover new treatments and a cure for angiosarcoma, a type of aggressive sarcoma that grows in the blood vessels.

  • Appendix Cancer Pseudomyxoma Peritonei (ACPMP) Research Foundation

    The mission of the ACPMP Research Foundation is to fund research for appendix cancer, Pseudomyxoma Peritonei (PMP), and Peritoneal Surface Malignancies (PSM). The foundation also promotes awareness and education programs for physicians and patients.

  • 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.

  • Esophageal Cancer Action Network (ECAN)

    The Esophageal Cancer Action Network (ECAN) is a non-profit organization that raises awareness about esophageal cancer and provides valuable resources and information to esophageal cancer 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 research on leiomyosarcoma and provides educational resources and support programs for patients and families experiencing leiomyosarcoma.

  • 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 within the research community. Advocacy and resource assistance is provided for patients and caregivers through multiple annual education symposia with major sarcoma treatment centers.

  • The Paula Takacs Foundation

    The Paula Takacs Foundation for Sarcoma Research, a NC nonprofit, is dedicated to funding research towards developing novel treatments for pediatric and adult sarcomas, significantly elevating sarcoma awareness, and celebrating our community of sarcoma caregivers, researchers, patients, and their families.

  • Rucker Collier Foundation

    The Rucker Collier Foundation was founded after a young boy, Rucker, lost his battle with an ultra-rare form of sarcoma, called sclerosing epithelioid fibrosarcoma (SEF). The foundation is committed to raising awareness and finding treatments for this rare tumor.

  • 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.

  • Sarcoma Foundation of America

    The Sarcoma Foundation of America works to support patients and families with sarcoma by funding sarcoma research and spreading awareness about sarcoma. The foundation provides support resources for patients and caregivers, and hosts advocacy and educational events.

  • Summer's Way Foundation

    The Summer’s Way Foundation is an organization dedicated to raising awareness about childhood cancer and supporting childhood cancer research. The organization was founded by Sharon and Sterling Hammond in memory of their daughter, Summer, who passed away from rhabdomyosarcoma. Summer’s Way provides support for patients and families and aims to advance childhood cancer research.

  • TargetCancer Foundation

    The TargetCancer Foundation supports research on rare cancers, promotes the development of treatment protocols for patients with rare cancers, and facilitates collaboration among doctors, scientists, and patients.

  • ThyCa: Thyroid Cancer Survivors' Association, Inc.

    ThyCa educates and supports people affected by thyroid cancer through its website, support services, patient information packets, handbooks, Low-Iodine Diet Cookbook, meetings, and funds research to improve treatments.