The National Cancer Institute My Pediatric and Adult Rare Tumor Network (MyPART) is a group of scientists, patients, advocates, and healthcare providers who want to help find treatments for rare cancers. They are currently are working on childhood, teen, and young adult solid rare tumors that have no cures. As part of that effort, their site provides some useful information about several rare tumors, including fibrolamellar.
One Bite At A Time: Nourishing Recipes for Cancer Survivors And Their Families by Rebecca Katz. This cookbook offers more than 85 recipes, featuring full nutritional analysis and anecdotes from cancer survivors. Chef Rebecca Katz shares delicious, nourishing recipes for cancer patients, who often experience culinary ups and downs because of sudden dietary restrictions and poor appetite due to damaged taste buds from harsh treatments.
The Natural History Study of Rare Solid Tumors, currently underway at the National Cancer Institute (NCI), is enrolling patients to better understand how rare solid tumors develop and grow. Natural history studies like this will help researchers learn more about fibrolamellar carcinoma (FLC) and other rare cancers and help shape the design and development of clinical trials to test new treatment options.
Dream Foundation serves terminally-ill adults and their families by providing end-of-life Dreams that offer inspiration, comfort and closure. Dreams can be as simple as an iPad to connect with loved ones afar, creating happy memories at a family dinner, or meeting a personal hero—a request that provides support and compassion. Dream recipients must live in the United States, be 18 or older, diagnosed with a life limiting illness with a life expectancy of 12 months or less, and lack the resources to fulfill the Dream themselves.
Pickles Group’s mission is to provide free peer-to-peer support and resources to kids affected by their parent or guardian’s cancer. Having a parent with cancer can be a lonely, isolating experience. Pickles Group creates thriving communities of kids supporting kids throughout their parent’s cancer journeys. Pickles Group helps kids build resilience, have fun with friends who get them, and heal along the way.
xCures is a venture-backed company that has developed a platform that arms advanced cancer patients and their oncologists with tools to make informed point of care decisions. Using the xCures platform, FLC patients and their care teams can benefit from the collective data, knowledge and experiences of everyone in the network, and in return, provide their data to the platform for future patient benefit.
The b-present Foundation is offering their free b-there connection tool online to help patients and their support network communicate and stay connected 24/7 from anywhere. Patients easily share their status, desire to connect, manage activities, and request needed items, and friends and family provide the support that best matches these needs. Information is private, clear, easy to act on and sign up, and avoids the pitfalls and hurt feelings that come with negotiating the who, when and what of support.
Cancer and Careers empowers and educates people with cancer to thrive in their workplace, by providing expert advice, interactive tools and educational events.
Cool Kid’s Campaign is devoted to improving the quality of life for pediatric oncology patients/survivors and their families by focusing on the academic, social and emotional needs brought on by a cancer diagnosis.