Resources

Spare Key’s mission is to provide assistance to families with a critically ill or seriously injured family member. No matter the illness, no matter the injury, no matter the income. They help families “Bounce and Not Break” through their Help Me Bounce platform, harnessing the power of crowdfunding to connect thousands of families directly to donors. Spare Key is committed to helping families stay by their loved one’s side by relieving the stress, anxiety and financial burden that comes with a medical crisis.

“Fibrolamellars of the World Unite!” is a closed Facebook group, so only those touched by the disease can be part of it. We encourage all newly diagnosed patients and their families to join. FWU! is a place where FLC patients and caregivers can exchange information, share experiences, and support one another. Just go to Facebook, type in the group name and request to be included. An administrator for the group will get back to you quickly.

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.

PostHope allows patients to create user-friendly, ad free, customizable support websites to journal their story, fundraise & rally patient support. Care sites can be custom tailored with the features a patient needs. Enable fundraising, make the site private or open to the world, approve posts before they are visible, or don’t. It’s all up to the user. No ads. No fees.

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.

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.

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.