My Pediatric and Adult Rare Tumor (MyPART) Network was created to connect rare tumor patients, families, advocates, physicians, and researchers. The goal of MyPART is to increase patient involvement in rare tumor research and develop more effective therapies and ultimately achieve cures for children and adult rare tumor patients through studying the biology and natural history of rare tumors. As part of the MyPART network, the Natural History Study of Rare Solid Tumors collects information, tissue, and tumor samples from rare tumor patients to study how rare tumors form and grow. Using this information, MyPART seeks to design new rare tumor clinical trials and develop novel therapies. MyPART is coordinated by the Center for Cancer Research, Pediatric Oncology Branch. 

Learn more about MyPART here and follow us on Twitter: @NCI_CCR_PedOnc

An important aspect of MyPART is the partnership with patient advocate organizations to help realize the MyPART mission and increase awareness of rare tumor research, clinical trials, and other rare cancer information. Read more about our partnerships here.

Chordoma is a rare type of cancer that grows in the bones of the base of the skull and spine. Only about one per one million people per year are diagnosed with chordoma. Because of the location of these tumors, chordoma is often difficult to treat. In about 30-40% of cases, the cancer can metastasize.

The first Pediatric and Young Adult Chordoma Clinic, held April 16^th-18^th 2019, was organized to bring together patients, expert healthcare providers, and the Chordoma Foundation with the ultimate goal of gaining new knowledge about chordoma in an effort to understand its mechanism and develop new treatments. A panel of physicians and other healthcare providers with unique expertise in the diagnosis and treatment of chordoma met with each of the patients and their families to provide recommendations and answer questions. In addition, during the clinic, medical histories, biospecimens, and patient reported outcomes were collected. Patients also met with a genetic counselor, psychologists, and other specialists to address many aspects of patient care.

The Chordoma Clinic kicked off on Tuesday night with a welcome dinner hosted by the Chordoma Foundation at the Children’s Inn at NIH, which provides a home away from home for pediatric patients and their families while participating in research efforts at the Clinical Center. Read more about the Chordoma Clinic here.

The EHE Foundation is an advocacy organization that seeks to find treatments and cures for epithelioid hemangioendothelioma (EHE) through efforts to:

• Spread awareness of EHE
• Promote research to find treatments and cures for EHE
• Advocate for EHE patients and families
• Connect patients, providers, and researchers to spread information

EHE is a rare type of sarcoma with an estimated incidence as low as one per one million people. Patients with EHE develop malignant vascular tumors in the soft tissues, liver, lungs, and bones. Founded in 2015, the EHE Foundation is a non-profit organization that aligns with the mission of MyPART with a focus on uniting patients, providers, and researchers to spread information and find treatments for EHE. The EHE Foundation was the first patient advocacy organization to sign on as an advocacy partner of MyPART.  As our advocacy partner, they agree to help share important rare tumor news, MyPART updates, and information on clinical trials.

Next Advocacy Spotlight: Sarcoma Alliance for Research through Collaboration (SARC)

July 13^th: GIST Awareness Day

GIST Awareness Day is celebrated internationally to bring awareness of Gastrointestinal Stromal Tumors (GIST) to those outside the GIST community.  GIST is a fairly common type of tumor that occurs in the digestive tract. Most GIST are characterized by mutations (a genetic change) in the gene PDGFRA or KIT. A small subset of GIST lacks these changes and is instead characterized by deficiency in the gene succinate dehydrogenase (SDH).  About 5-7% of GIST cases are SDH-deficient. Patients with SDH-deficient GIST are at a higher risk for developing pulmonary chondromas (a benign tumor of the lung) and paragangliomas (a rare tumor that grows in nerve cells). Since 2008, the NIH has hosted a yearly clinic for patients with GIST that lack PDGFRA or KIT mutations. These clinics have contributed substantially to the understanding of GIST. Events are hosted across the country and internationally to educate the community about GIST and provide support for GIST patients.  

July is also Sarcoma Awareness Month

July is national Sarcoma Awareness Month. Sarcomas are cancers that form in the connective tissues of the body, including nerves, muscles, joints, bones, fat, and blood vessels. Supporters wear yellow and participate in several events, including race/walk events, that are hosted across the country to raise awareness, collect donations for sarcoma research, and provide support to patients and families.

Past Awareness Dates:

May: National Neurofibromatosis Month

Neurofibromatosis (NF) is a genetic disorder that leads to a wide variety of tumors that are rare in the general population. People with NF type 1 can get rare tumors of the nervous system, including neurofibromas, malignant peripheral nerve sheath tumors, and optic pathway gliomas. They can also develop other rare tumors, including gastrointestinal stromal tumors and pheochromocytoma. People with NF type 2 can get different types of rare nervous system tumors, including schwannomas, meningiomas, and ependymomas. In a related disease, Schwannomatosis, people develop many painful schwannomas, tumors that grow on peripheral nerves. There are no current cures for Neurofibromatosis or Schwannomatosis, and treatment varies depending on the severity of the tumors.

May is recognized as National Neurofibromatosis Month, and May 17^th is World NF Awareness Day. A variety of different advocacy organizations celebrate Neurofibromatosis Month as a time to highlight the stories of patients who live with NF, and the physicians and researchers working to find treatments and cures. Throughout the month of May, organizations may display blue and green lights to show support for Neurofibromatosis awareness.

June 2^nd: National Cancer Survivors Day 

National Cancer Survivors Day (NCSD) is recognized worldwide as a day to celebrate those who have survived cancer, and to give hope to those diagnosed with cancer. Participants can find a community that hosts annual NCSD events through their local hospital or American Cancer Society office. The American Association for Cancer Research (AACR) also recognizes June as National Cancer Survivors Month.