Helpful Resources

This page contains lists of resources that members of our community have found helpful.  If you know of other resources or organizations that should be added to these lists, please let us know.

Below are lists of organizations dedicated to helping patients and their families with different types of financial support.

St. Jude Children’s Research Hospital is based in Memphis, TN but has affiliate care throughout the United States. Families never receive a bill from St. Jude for treatment, travel, housing or food. St. Jude accepts insurance but many services provided by St. Jude have never been covered by insurance, and will not be in the future.

Cancer patients can often fly to medical treatment centers around the country – absolutely free – in the empty seats on corporate jets or on private planes. Many of these services allow patients to avoid costly airfare, delays and unnecessary exposure to airport crowds.

The following organizations work with cancer patients to provide air transportation to medical centers where they can receive much needed medical treatments:

Air Care Alliance helps thousands of people each year with medical transportation. The Air Care Alliance acts as an umbrella organization for volunteer pilot based Public Benefit Flying organizations. Using their own time and general aviation aircraft, pilot volunteers from the many PBF organizations provide missions of community and humanitarian support, including transporting patients in need to facilities to receive medical attention they might otherwise have to do without.

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.

Corporate Angel Network helps cancer patients access the best possible treatment for their specific type of cancer by arranging free travel to treatment facilities across the country using empty seats on corporate jets. Corporate Angel Network, a national public charity, works directly with patients and families to coordinate their travel needs with flight plans of their Corporate Angels, some of the nation’s largest corporations. Since 1981, they’ve arranged more than 20,000 flights with cancer patients aboard.

LifeLine Pilots arranges FREE air transportation through volunteer pilots for financially distressed children and adults with medical or humanitarian needs. LifeLine Pilots services a 10 state region bounded by Minnesota, Ohio, Missouri and Tennessee.

Miracle Flights provides free flights to those in need of life-changing medical care not found in their local communities. Qualifying families can receive travel assistance for a child patient and up to 2 parents or legal guardians. Flights for adult patients (age 18 and up) are provided for the patient and caregiver, if medically necessary.

Patient Airlift Services arranges free air transportation for individuals requiring medical diagnosis, treatment or follow-up who cannot afford or are unable to fly commercially. PALS also arranges volunteer flights for family members of patients as compassionate missions, to ensure patients have support when they are away from home for long periods.

Organizations that can provide housing support during medical treatments include:

Healthcare Hospitality Network is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities. Hospital hospitality houses (HHH) provide free or significantly reduced cost lodging to patients and their families while receiving medical care away from their home communities. Unlike a hotel, HHHs provide opportunities for those going through similar stressful situations to come together as a community where they can support one another. HHHs have shared kitchens, common living areas and private bedrooms just like a home, creating a warm and comfortable place far from home.

Hospitality Homes provides short-term housing in volunteer host homes for families and friends of patients receiving medical care in the Boston area. Their services are free of charge and are made possible by the generosity of our volunteer hosts and supporters.  Founded in 1983, Hospitality Homes was the first program of its kind in the nation. Since 1983, Hospitality Homes has served more than 15,300 families.

Joe’s House is not an actual house, but a nonprofit organization that helps cancer patients and their families find a place to stay when traveling away from home for medical treatment. It lists cancer treatment centers and hospitals across the country with nearby lodging facilities that offer a discount. Although Joe’s House caters to cancer patients, any patient, regardless of diagnosis may use the lodging facilities listed.

Ronald McDonald House Charities supports and facilitates family-centered care. Their Ronald McDonald House programs, located near top children’s hospitals, allow parents who are far from home to stay close to their hospitalized child and benefit from the comforts of home without incurring hotel and food costs. Many major medical centers have a Ronald McDonald house nearby for families with children under treatment, making the organization a good resource to locate temporary residence options. Every Ronald McDonald House provides a comfortable, safe place to stay, plus the compassion and hospitality of staff, volunteers, and other families — all just steps away from the hospital.

In addition, contacting the social services of any major medical center can frequently provide housing leads and discounts at local hotels.

The cost of cancer care can be a major concern for patients and their families. Many national and local service organizations help people with cancer who are facing financial challenges. Several are listed below:

Cancer Financial Assistance Coalition is a coalition of organizations helping cancer patients manage their financial challenges. To find out if financial help is available, CFAC offers a searchable database that can identify member organizations that can potentially provide targeted financial assistance.

The HealthWell Foundation helps the underinsured afford critical medical treatments — because no one should go without essential care. The HealthWell Foundation is an independent non-profit organization that provides financial assistance to adults and children to cover the cost of prescription drug coinsurance, copayments, deductibles, health insurance premiums and other selected out-of-pocket health care costs.

Medicine Assistance Tool (MAT) matches patients with resources and cost-sharing programs that may help lower out-of-pocket medicine costs, whether or not you have insurance. MAT provides a search engine designed to help patients, caregivers and health care providers learn more about the resources available through the various biopharmaceutical industry programs. MAT is not its own patient assistance program, but rather a search engine for patient assistance resources offered by the biopharmaceutical industry.

RXAssist can help patients learn about ways to use pharmaceutical company programs and other resources to help reduce medication costs. Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need - all in one place.

The Samfund provides support to young adults who are struggling financially because of cancer. Through direct financial assistance and free online support and education, the Samfund helps young adults survive and move forward with their lives after cancer. Examples of Samfund grants include helping young adult survivors get out from under medical debt, start a family, pay back student loans, or keep their home.

Cleaning For A Reason connects households battling cancer with local companies that can clean their homes for free. When cancer makes life at home difficult, their network of residential cleaners, cleaning industry volunteers and community volunteers come together to support cancer patients and their families. They serve all 50 states and Canada.

Triage Cancer is a national, nonprofit organization that provides education on the practical and legal issues that can impact individuals diagnosed with cancer and their caregivers, through free events, materials, and resources. Their goal is to provide access to quality information about cancer related legal and practical issues that may arise after a diagnosis. Armed with that information, patients not only see the big picture, but can decide what needs to be handled first and what can wait – the definition of triaging.

A few organizations are dedicated to helping young adult cancer survivors pursue higher education by offering scholarships for college and other higher educational programs. These organizations include:

NCCF is committed to providing need-based financial support to young adult survivors who are pursuing higher education throughout their treatment and beyond. Furthermore, the Foundation promotes awareness and prevention of cancer within the young adult community.

Northwestern Mutual Foundation offers two scholarships: one for childhood cancer survivors and one for siblings of those affected by childhood cancer. These students deserve every opportunity to pursue higher education and continue to achieve their dreams.

The Social Security Administration has designated fibrolamellar as one of the diseases which may be fast tracked to get disability designation. The official announcement details from August 21, 2018 are included here.

Many social media groups and non-profits are focused on helping patients and their families connect to others with similar experiences or accessing counseling or peer support. Relevant organizations include:

The following facebook groups are dedicated to help and support the fibrolamellar community:

FCF’s official Facebook page highlights the latest news and events for the community.

“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.

Many cancer organizations have been established to specifically help adolescents and young adults navigate their journey with cancer. Notable AYA organizations include:

Elephants and Tea is a media company with the mission to help adolescent and young adult patients, survivors and caregivers know they are not alone in their fight with cancer. The Elephant in the room is cancer. Tea is the relief conversation provides. Be Heard. Join the Herd.

JTV Cancer Support is a project for teenagers and young adults who have been affected by cancer. They believe in sharing experiences of cancer creatively. Using all aspects of media JTV enables young people to explore and express their feelings, and make some sense of their very personal journeys from diagnosis onwards.

Stupid Cancer provides resources for those affected by young adult cancer. It offers a lifeline to the adolescent and young adult cancer community by connecting them to age-appropriate resources and peers who get it. The organization builds online and offline support communities nationwide through local events, social media, educational workshops, an international annual conference and a live talk radio podcast, The Stupid Cancer Show.

Teen Cancer America‘s mission is to improve the experience, outcomes and survival of teens and young adults with cancer by providing facilities and programs designed especially for them in hospitals throughout the USA.

Individuals who are affected by cancer often feel anxious, sad or confused about what they are feeling. That’s normal. Part of the challenge is accepting the need for support. Organizations that can help patients connect to support groups, helpful resources, and one-on-one counseling include:

The Cancer Support Community (CSC) is an international non-profit organization committed to providing support, education and hope to anyone affected by cancer. As one of the largest employers of psychosocial oncology mental health professionals in the United States, the organization offers a network of personalized services and education for all people affected by cancer.

Chemo Angels offers support to those who find themselves in the most challenging situation of their lives – battling a cancer diagnosis and undergoing IV chemotherapy or intensive immunotherapy treatment. Chemo Angels’ volunteers support their “buddy” throughout their journey with cards, uplifting messages, supportive words and lots of positive energy. The encouragement Chemo Angels provide helps give patients the comfort and confidence of knowing they are not alone in their fight.

Imerman Angels partners anyone seeking cancer support with a “Mentor Angel.” A Mentor Angel is a cancer survivor or survivor’s caregiver who is the same age, same gender, and most importantly who has faced the same type of cancer. The matching service is free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world.

Livestrong focuses on improving the lives of people affected by cancer by offering tools and resources to help ease the challenges of a cancer diagnosis. They offer free one-on-one support and community programs to patients and caregivers, and partner with institutions and policymakers to try to change the way the world fights cancer.

During the course of a health crisis, family and friends are often looking for frequent updates of the patient’s condition and ways they can be helpful to the patient and caregivers. Several web sites offer easy-to-use platforms to communicate patient updates and coordinate needed assistance, including:

CareCalendar provides free website services to organize meals and other help for families during a time of illness, recovery or a life changing event. When a loved one needs help, simply list the help that is needed. Family and friends can then sign up to fill those needs. CareCalendar works like an online signup sheet, only better.

CaringBridge provides a forum for updates on the patient’s condition and a platform for supportive comments from site visitors. Family and friends are an amazing source of support for a patient, but constantly sharing updates with each and every one of them is impractical. CaringBridge replaces countless texts and emails with a free, easy-to-use communications platform that includes on-line journal and care planning capabilities.

Lotsa Helping Hands provides an easy way to organize help for people in need by creating a central place to coordinate meals and communicate with friends & family. Its service brings together caregivers and volunteers through online communities that organize daily life during times of medical crisis. Its care calendar can be used to assign meal deliveries and coordinate rides to appointments. Its announcements and Well Wishes help keep the community up-to-date and offer emotional support.

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.

Many respite and wish granting organizations strive to provide ill patients and/or their families and caregivers the opportunity to focus on something positive in their lives. The products, trips, or experiences given by these organizations can provide individuals a much needed break from a struggle with a disease or the chance to give whole families a happy memory together. Programs include:

3 Little Birds 4 Life strives to make sure that young adult cancer patients, ages 25 – 55, have a daily wish granted and are given the resources they might need to find help in all aspects on their journey. The organization provides celebrations to those currently managing cancer throughout the St Louis Metro Area.

Deliver The Dream provides therapeutic programs to families facing a serious illness, crisis or disability. Its programs restore hope, strengthen relationships and change perspectives to provide inspiration for the future. Most of its participants live in the state of Florida, however, they serve families throughout the United States.

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.

For Pete’s Sake Cancer Respite Foundation provides adult cancer patients (24-55 years of age), their caregivers and their children with a break from cancer at one of their respite locations. Their Cancer Respite Program includes two forms, Travel Respite and Staycation Respite.  Both experiences are transformative and address the emotional, psychosocial, financial, physical and spiritual traumas that families confront with a cancer diagnosis. FPS works with oncology professionals at leading cancer centers to create these care-free, cost-free respite experiences. 

Inheritance Of Hope strives to inspire hope in young families facing the loss of a parent. They take families facing the loss of a parent on a life-changing Legacy Retreat®, an all expenses-paid experience where families create lifelong memories and receive tools to navigate the challenges of terminal illness.

Jack and Jill Late Stage Cancer Foundation treats families to ” WOW experiences”, giving children who will lose their Mom or Dad to cancer a timeout to create indispensable memories as a family…while they can. JAJF’s Oncology Coalition Partners across the United States prescribe families WOW! Experiences as part of the treatment protocol for the patient, spouse and children. The foundation helps families strictly from oncologists’ referrals.

Just A Break From Cancer gives adults with cancer a “Just-a-Break” from cancer (from a nice night out, to a couple days “get-a-way”) at no charge to patients with advanced stage cancer. They currently are operating in the Ogden, St. George and Salt Lake City areas, but expect to be expanding soon to Logan and Provo as well as to Chicago, New Orleans, and Las Vegas areas.

Life Is Good No Matter What provides adults living in northern Ohio who are dealing with life-threatening cancers an escape from their battle and diagnosis. They strive to want to give adults with life-limiting cancers the same thing: something to look forward to – whether it’s checking an item off the proverbial bucket list or giving someone a chance to pursue a lifelong dream.

Make-A-Wish strives to grant the wish of every child under age 18 diagnosed with a critical illness. A wish experience can be a game-changer for a child with a critical illness. At the time of referral to the Make-A-Wish program, children must be diagnosed with a critical illness, be older than 2½ years and younger than 18, and have not received a wish from another wish-granting organization.

Both the internet and traditional media provide a rich range of resources to find information about cancer treatments, as well as inspiring stories of how others have dealt with serious illnesses. Valuable cancer-related reference sites and recommended books and videos include:

Many commonly referenced medical information services like WebMD and Medscape, plus general cancer sites like the American Cancer Society and the National Cancer Institute provide valuable information for a wide range of cancer patients. In addition to the large established sites, many smaller focused sites may be of interest to the fibrolamellar community, including:

Chemocare is designed to provide the latest information about chemotherapy to patients and their families, caregivers and friends. The information on Chemocare.com is provided by the medical professionals at Cleveland Clinic Cancer Center. The content is updated frequently with the latest and most up-to-date chemotherapy related information.

MolecularMatch provides physicians, nurse navigators, or patients information on specific treatments for specific mutations and cancers. They match a patient’s personalized patient details to clinical trials, targeted therapies and immunotherapies, and provide linkages to related literature and publications.

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.

NORD, the National Organization for Rare Diseases, is an advocacy organization dedicated to improving the lives of individuals and families living with rare diseases. Its offers a database of reports on more than 1,200 diseases, plus a resource center with free webinars, fact sheets, infographics and other helpful materials.

FCF’s YouTube Channel includes a series of videos produced for the FLC community including virtual research tours, research updates, clinical trial overviews and panel discussions.

Between Two Kingdoms is the well-written memoir of Suleika Jaouad. It is a deeply moving story of illness and recovery that traces one young woman’s cancer journey from diagnosis to remission to re-entry into “normal” life. Some readers may recognize her name from her syndicated "Life, Interrupted" column from the New York Times.

Cancer: 50 Essential Things to Do by Greg Anderson empowers cancer patients and their loved ones to move beyond their disease. Greg Anderson, a cancer survivor, designed this book for the recently diagnosed, those with recurring symptoms, and those who are well but have a lingering fear that the disease may strike again.

Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee is a magnificent “biography” of cancer - from its first documented appearances thousands of years ago through the epic battles in the twentieth century to cure, control, and conquer it, to a radical new understanding of its essence. It won the 2011 Pulitzer Prize for General Non-Fiction.

Glimpses of Heaven: True Stories of Hope and Peace at the End of Life’s Journey by Trudy Harris. New York Times bestseller Glimpses of Heaven gives an intimate look at the final thoughts, words, and visions of terminally ill and dying people. Told through the eyes of former hospice nurse Trudy Harris, more than forty true stories paint a reassuring picture of life’s end.

There’s No Place Like HOPE  – A Guide to Beating Cancer in Mind-Sized Bites by Vickie Girard is a survival guide for cancer patients and their families. Regardless of the type of cancer, this is an immediate, practical, and inspiring guide that will empower any patient to better fight and survive the disease. According to Girard, cancer is a beatable, treatable, survivable disease.

What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope. This book, edited by Julie K. Silver, MD, relates the experiences of hundreds of cancer survivors who candidly relate what helped get them through every aspect of the cancer journey.

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 Cancer Diet Cookbook: Comforting Recipes for Treatment and Recovery by Dionne Detraz RD. No matter what your cancer journey may be, it’s essential to make sound dietary choices during this incredibly challenging time. The Cancer Diet Cookbook can help you during treatment and recovery by offering tons of healthy and tasty meal options made in 30 minutes or less, with five simple ingredients, or all in one pot.

The Cancer Fighting Kitchen: Nourishing, Big-Flavor Recipes for Cancer Treatment and Recovery by Rebecca Katz & Mat Edelson. This new and revised edition of the IACP award-winning cookbook brings the healing power of delicious, nutritious foods to those whose hearts and bodies crave a revitalizing meal, through 150 new and updated recipes.

Other organizations dedicated to help and support the fibrolamellar community include:

FibroFighters is dedicated to helping patients and caregivers navigate their personal fibrolamellar journeys. Contact Tom Stockwell at tom@fibrofighters.org for more information.

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.