The Fibrolamellar Registry is focused on helping patients advance research into fibrolamellar by sharing their medical information with researchers. Its patient registry gathers survey information, medical histories, and test results for patients with FLC, and stores them in a highly secure database.
Air Charity Network serves all 50 states and its volunteer pilots utilize their own aircraft, fuel and time to provide free air transportation to medical facilities for citizens who are financially distressed or otherwise unable to travel on public transportation. Air Charity Network members also coordinate flights to fly organ transplant candidates, people involved in clinical trials, chemotherapy or other repetitive treatment, disabled or sick children to special summer camp programs, and for many other humanitarian reasons.
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.
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.
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.
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.