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.
Cholangiocarcinoma Foundation

The Cholangiocarcinoma Foundation is a global non-profit organization that connects scientists, healthcare providers, patients, and advocates in an effort to share resources, support research advancements, and improve the lives of people with cholangiocarcinoma.
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Chondrosarcoma Foundation

The Chondrosarcoma Foundation is dedicated to spreading awareness and educating the public about chondrosarcoma. The organization supports patients and their families as well as advocates for better treatments and care for patients with chondrosarcoma.
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.
Chris "CJ" Johnson Foundation

The Chris Johnson Foundation aims to raise awareness and increase education about renal medullary carcinoma, a type of rare kidney tumor. The foundation also supports research initiatives and connects families with resources in an effort to reduce health disparities across populations.
Clear Cell Sarcoma Foundation

The Clear Cell Sarcoma Foundation, formerly known as 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.
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.
cureMEC

CureMEC: The Myoepithelial Carcinoma Project is an advocacy organization founded in 2022 to raise awareness, build community, and support research for myoepithelial carcinoma (MEC), a rare and aggressive tumor. This organization supports patient-led initiatives to advance knowledge of MEC and ultimately develop new treatments and a cure.
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.
Joey's Wings

Joey’s Wings aims to raise awareness and find a cure for kidney cancers affecting children and young adults, including translocation renal cell carcinoma, and to provide support resources for patients and families experiencing childhood cancers.
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.
Let's Cure ACC

Let's Cure ACC is an international community that provides resources and coordinates support groups for patients with adrenocortical carcinoma (ACC) and their caregivers. They also provide lists of national associations and of the leading ACC medical experts worldwide (available in multiple languages).
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.
MIB Agents Osteosarcoma Alliance

MIB Agents is a non-profit organization dedicated to Making It Better for the entire osteosarcoma community, from patients and caregivers to physicians and researchers, through support programs, education, and research.
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.
NORD Rare Cancer Coalition

Created in 2017, the National Organization for Rare Disorder (NORD) Rare Cancer Coalition® (RCC) aims to unite NORD member organizations working in rare cancers to collaborate on issues facing the greater rare cancer community. NORD has more than 40 years of experience in the rare disease space and provides its' partners with a proven support system and depth of resources to advance the fight against rare cancers.
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.
Rare Cancer Research Foundation

The Rare Cancer Research Foundation (RCRF) is dedicated to facilitating research collaborations to develop therapies for rare cancers. RCRF is a supporter of data sharing and builds research infrastructure to help researchers utilize patient registries, tissue samples, cell lines, animal models, and genome sequencing data. RCRF also coordinates Pattern.org, which helps patients donate extra tumor tissue and fluid to cancer research, accelerating discoveries in rare cancers.
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.
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.
SDH-RA: SDH-Deficient Cancer Research Advocates

SDH-RA promotes awareness of SDH-deficient cancers, supports research efforts aimed at finding treatments for SDH-deficient cancers, including SDH-deficient gastrointestinal stromal tumors (GIST), and facilitates the transfer of tumor tissue from patients to researchers. SDH-RA's motto is "patients helping patients," and the organization coordinates a private Facebook group to share resources and provide support.
SFA: 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.
SMARCB1 Hope

SMARCB1 Hope is a non-profit organization dedicated to finding a cure for SMARCB1-deficient tumors, which are a group of rare, aggressive cancers with poor prognoses. SMARCB1 Hope was founded by Cassie and Jean-Baptiste Toulouse who lost their 23-year-old daughter to a SMARCB1 deficient sinonasal tumor in 2020.
Stupid Cancer

Stupid Cancer is a nonprofit organization that strives to support everyone affected by AYA (adolescent and young adult) cancer. They offer unique programs and age-appropriate resources to help end isolation, build community, and allow young adults experiencing cancer to feel connected to their peers.
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.
Teen Cancer America

Teen Cancer America, founded by legendary musicians Roger Daltrey and Pete Townshend from the band The Who, aims to improve the quality of life and survival of teen and young adult cancer survivors. The organization provides specialized education and support to hospitals and health systems throughout the US and develops programs for the unique needs of teens and young adults.
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.