Patient Advocacy Partners
We are proud to highlight many of our partners in patient advocacy and support who are dedicated to improving the future for those affected by cancer.
If you're interested in partnering with us, please email barbara@rarecancer.org
The Adenoid Cystic Carcinoma Research Foundation (ACCRF) was started in 2005 with the goal of getting better therapies to ACC patients as fast as possible. As a patient-driven organization, ACCRF acts with urgency and care to lay the foundation for success in achieving their mission
A Cure in Sight (ACIS) supports families who have ocular melanoma and focuses on research for a cure. Through public and private partnerships, they provide clear and reliable education information and access to a support community for patients and their caregivers.
The Appendix Cancer Pseudomyxoma Peritonei (ACPMP) Research Foundation exists to support and fund promising research that moves toward a cure for pseudomyxoma peritonei (PMP), appendix cancer, and related peritoneal surface malignancies (PSM).
The Alliance for Rare Cancers (ARC) is working to integrate and scale solutions for rare cancer challenges across discovery, development, and care delivery systems. It is a strategic, coordinated national alliance capable of solving the key challenges that impede innovation in rare cancer treatments.
Angiosarcoma Awareness is a patient-driven nonprofit dedicated to researching better therapies and a cure for angiosarcoma. Their hope is to fund research that will reveal the molecular underpinnings of the disease which might help tailor individual therapies.
BlackDoctor.org is the world’s largest and most comprehensive online health resource specifically targeted to African Americans. They provide readers with access to innovative new approaches to the health information they need in everyday language so they can break through the disparities, gain control and live their life to its fullest.
The Brave Like Gabe Foundation supports rare cancer research and empower all cancer survivors through physical activity. The organization started as a hashtag to support professional runner Gabriele “Gabe” Grunewald as she sought treatment for her third battle with an incurable rare salivary gland cancer in 2017.
The Global Resource for Advancing Cancer Education (Cancer GRACE) provides expert-mediated information on current and emerging cancer management options in order to empower patients, caregivers, and health professionals to become direct partners in cancer care.
CANCollaborate is a non-profit dedicated to fostering communication, cooperation and collaborations among researchers and institutions with the goal of accelerating treatments and cures for diseases.
The Cancer Precision Medicine Commons is a place for organization leaders to share information and explore opportunities for cross-tumor collaborations. Their goal is to increase knowledge about, access to, and appropriate use of the latest oncology precision medicine tools.
Cheeky Charity is here to make a bold impact on colorectal and anal cancer prevention and early detection, especially for the LGBTQ+ and younger communities. They are a queer-led organization with a ‘cheeky’ approach that gets people talking, learning, and taking action.
The Children’s Tumor Foundation drives research, expands knowledge, and advances care for the NF (neurofibromatosis or schwannomatosis) community.
The purpose of the Chondrosarcoma (CS) Foundation is to educate the public about Chondrosarcoma, support and advocate for patients and families that are suffering from this disease, and advocate to improve the treatment and care for these patients.
The Chordoma Foundation is a patient-centered organization that strategically invests in mutually reinforcing programmatic areas that support the research to find better treatments, patient services to create better experiences, and healthcare improvements to drive better care.
The Chromophobe and Oncocytic Tumor Alliance (COA) is dedicated to advancing research and supporting patients affected by chromophobe renal cell carcinoma and oncocytic tumors. Established to provide vital resources, COA aims to raise awareness and foster community among those impacted by these cancers and tumors.
The Clear Cell Sarcoma Foundation (formerly Sara’s Cure) has one mission - to make Clear Cell Sarcoma survivable through education and scientific research while ensuring all patients and caregivers impacted have a voice and platform to enact change and strive towards the cure.
cureMEC was founded in 2022. Their mission is to raise funds to support research and education to find new treatments and ultimately a cure for Myoepithelial Carcinoma (MEC).
Cures Within Reach’s mission is to leverage the speed, safety and cost-effectiveness of repurposing, testing already approved therapies for unsolved diseases: driving more treatments to more patients more quickly.
The mission of the Desmoid Tumor Research Foundation (DTRF) is to aggressively fund research to accelerate the development of improved therapies and ultimately find a cure for desmoid tumors. The DTRF collaborates with dedicated researchers and clinicians worldwide to improve the lives of patients through education, awareness and support.
Dragon Master Initiative’s mission is to find and accelerate cures for cancers, with a special focus on pediatric brain cancers, by fostering and rewarding a community of collaboration and innovation. They seek to expedite research, development, and treatments as well as to improve the quality of life for patients and their families.
The Epithelioid Hemangioendothelioma (EHE) Foundation’s mission is to seek treatments and a cure for Epithelioid Hemangioendothelioma (EHE) by increasing awareness, pursuing scientific research, advocating for and supporting EHE patients, and bridging information between researchers, providers and patients
The Firefighter Cancer Support Network helps firefighters, EMS professionals, and their families cope with cancer. They provide occupational-cancer awareness, prevention training, and support for those dealing with cancer nationwide.
The Foundation for the National Institutes of Health (FNIH) creates and leads alliances and public-private partnerships that advance breakthrough biomedical discoveries and improve the quality of people’s lives.
Global Patient Advocacy Coalition (GPAC) is committed to working collaboratively to endorse, support, and empower global patient advocates. GPAC strives to help every patient make educated and informed decisions about their medical procedures. GPAC teams work collaboratively with the FDA, medical providers, legislators, and other advocates to improve patient safety and the overall standard of care.
The Head and Neck Cancer Alliance (HNCA) works with health professionals, caregivers, and patients to enhance the overall effort in prevention, treatment, and detection of cancers of the head and neck region.
HPV Cancers Alliance is a national nonprofit committed to reducing the burden of HPV through comprehensive education, prevention, and advocacy. They offer trusted, evidence-based information on HPV infection, vaccination, and cancer prevention—alongside emerging research and updates on HPV-related cancer treatment
HunterSeven Foundation, a veteran-founded, 501(c)(3) organization, conducts research on military exposures among post-9/11 veterans and educates the veteran and healthcare population on critical health information relating to their exposures, including those that have been linked to various cancers.
iCureASPS funds research and provides valuable information and a communication platform for patients with Alveolar Soft Part Sarcoma (ASPS).
The Jacqueline Rush Foundation provides support, education, and resources to Lynch Syndrome carriers and their families.
Jamal’s Helping Hands provides client-focused support and educational resources to rare disease patients and their families to assist in the management of their healthcare.
The mission and sole commitment of the Jedi Rare Cancer Foundation is to accelerate scientific discovery that will change lives and enable better outcomes for rare cancer patients and their families.
The mission of Joey’s Wings is to fund research that focuses on kidney cancers affecting children and young adults, raise awareness,and provide support to families affected by childhood cancer.
The Judy Nicholson Foundation stands as a beacon of support and empowerment for kidney cancer patients and their caregivers. Their commitment goes beyond conventional assistance; it’s about creating a community of resilience and hope.
The KCA seeks to be the leading source of education and resources for patients, caregivers, and anyone impacted by kidney cancer. We also promote the science of kidney cancer through two annual research symposiums and a robust grant program as well as participate in legislative advocacy efforts.
The Leiomyosarcoma Support and Direct Research Foundation (LMSDR) is dedicated to improving patient outcomes by supporting Leiomyosarcoma research, providing patient education and support, and fostering collaborative efforts.
The Leptomeningeal Cancer Foundation is working to improve quality and extend quantity of life of all people diagnosed with leptomeningeal cancer.
The LUNGevity Foundation is dedicated to funding scientific research, advocating for the lung cancer community, and empowering patients to be active decision makers in their treatment process.
The Lonon Foundation supports children impacted by a parent's cancer diagnosis. Through our free resources we promote coping and resilience, helping children find comfort, heal, and grow from their shared experiences.
The Max Vincze Foundation funds innovative research to discover therapies for NUT carcinoma and other rare young adult cancers.
The mission of the Melanoma Research Alliance (MRA) is to end suffering and death due to melanoma by collaborating with all stakeholders to accelerate powerful research, advance cures for all patients, and prevent more melanomas.
The MET Crusaders is a community of lung cancer patients, care givers, advocates, researchers, and physicians dedicated to helping patients with the MET alteration live normal lives.
MIB Agents is a leading pediatric osteosarcoma nonprofit dedicated to making it better for the osteosarcoma community of patients, caregivers, doctors, and researchers through programs, education and research.
The National LeioMyoSarcoma Foundation is dedicated to providing education, advocacy, support, and research for the LMS Community as they move forward in the quest for the cure.
The Neuroendocrine Tumor Research Foundation (NETRF) offers information and education to those with neuroendocrine tumors and is the leading private funder of research into causes and treatments of neuroendocrine tumors (NETs) in the search for a cure.
The Northwest Sarcoma Foundation provides direct support to Sarcoma patients throughout the Pacific Northwest, advocates for the broader Sarcoma community, and funds vital research to advance Sarcoma treatment options.
No Stomach for Cancer helps advance awareness and education about stomach cancer, including Hereditary Diffuse Gastric Cancer (HDGC). They also support research efforts for screening, early detection, treatment, and prevention of stomach cancer.
The NUT Carcinoma Support page provides support for patients, friends and families of those diagnosed with NUT Carcinoma.
Oligo Nation was founded to bring the oligodendroglioma community together and mobilize around funding medical research for new, more effective treatments. Their research strategy is to capitalize on the breakthrough approaches succeeding against other cancers, but which have not been tested against Oligo, including immunology and stem cell therapies.
One Cancer Place is here to guide patients through the complex cancer landscape and help them begin to understand its unique language, learn how to advocate for themselves and others, and provide of a welcoming community full of other cancer-experienced people for support.
The Oral Cancer Foundation’s missions are rooted in science. OCF funds life-saving research and work that elucidates mechanisms for early discovery and furthers disease understanding. They provide direct peer to peer support for oral cancer patients and their caregivers, disseminate vetted professional and public information on oral and oropharyngeal cancer, and work as advocates for national policies that facilitate disease awareness, early discovery, and improve treatments and their outcomes.
The mission of the Pheo Para Alliance (PPA) is to empower patients with pheochromocytoma or paraganglioma, their families and medical professionals through advocacy, education and a global community of support, while helping to advance research that accelerates treatments and cures.
Renal Medullary Carcinoma (RMC) Inc. is dedicated to ending premature death and saving lives of those affected by RMC, through an alliance of education, advocacy and support.
The ROS1ders is a global group of patients and caregivers living with ROS1+ cancer. seeking to improve outcomes for all ROS1+ cancers through community, education, and research.
Rein in Sarcoma has a three-pronged mission: educating the public and medical community about sarcomas, supporting sarcoma patients and their loved ones, and funding research directed toward developing new treatments and finding a cure for sarcoma cancers.
The Sam Day Foundation advances research for childhood and young adult cancers and facilitates life-giving support and experiences, so kids with cancer can survive and live well.
SARC (Sarcoma Alliance for Research through Collaboration) is a non-profit organization dedicated to the development and support of research for the prevention, treatment, and cure of sarcomas – a cancer of the bone and connective tissue of the body. They directly develop, sponsor, and manage research projects for pediatric and adult sarcomas.
The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education, and support.
The Sarcoma Foundation of America is working to improve outcomes for people diagnosed with sarcoma and to increase the number of survivors.
The Serenely Guided Foundation is a 501 (c)(3) organization dedicated to improving the lives of patients, families, caregivers and those affected by all rare diseases. Their focus is providing easy access to resources in the areas of wellness, nutrition, and awareness.
SMARCB1 Hope is a non-profit organization dedicated to finding effective treatments for SMARCB1-deficient cancers.
TargetCancer Foundation directly supports initiatives at the forefront of rare cancer treatment by funding innovative research, fostering collaborations, and raising awareness among scientists, clinicians, and patients.
The Thyroid Cancer Survivors’ Association (ThyCa) works to educate and support the global thyroid cancer community and invest in research.
The V Foundation for Cancer Research is committed to funding the best scientists to accelerate Victory Over Cancer® and save lives.
Additional Information
If you do not see your disease covered by one of the above foundations and are interested in finding an advocacy or support group, please contact us.