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.
Many cancer organizations have been established to specifically help adolescents and young adults navigate their journey with cancer. Notable AYA organizations include:
|Organization||Mission and overview|
|First Descents provides life-changing outdoor adventures for young adults (ages 18 – 39) impacted by cancer and other serious health conditions.|
|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.|
|15-40 Connection is driving a new cancer conversation to improve cancer survival rates with their “3 Steps to Early Detection”, developed to help people recognize warning signs of cancer early and work with a doctor to receive the most effective health care.|
|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.|
|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.|
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:
|Organization||Mission and overview|
|Air Care Alliance helps thousands of people each year with medical transportation.|
|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.|
|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.|
|Miracle Flights provides free flights to those in need of life-changing medical care not found in their local communities.|
|LifeLine Pilots facilitates FREE air transportation through volunteer pilots for financially distressed children and adults with medical or humanitarian needs.|
|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.|
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:
|Organization||Mission and overview|
|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.|
|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.|
|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.|
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.
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 updates and coordinate needed assistance, including:
|Organization||Mission and overview|
|CaringBridge||CaringBridge provides a forum for updates on the patient’s condition and a platform for supportive comments from site visitors.|
|Lotsa Helping Hands||Lotsa Helping Hands allows users to create a central place to coordinate meals and help for friends & family.|
|PostHope||PostHope allows patients to create free support websites to journal their story, fundraise & rally patient support.|
|CareCalendar||CareCalendar provides free website services to organize meals and other help for families during a time of illness, recovery or a life changing event.|
- Clinical Trials – Ghassan Abou-Alfa, M.D., a medical oncologist at Memorial Sloan Kettering Cancer Center, discusses the basics of clinical trials, and why participation in them is important.
- Animated Liver – description of the function of the liver – a Ted Ed video
- Crazy Sexy Cancer – “Crazy Sexy Cancer is more than a thought-provoking documentary; it’s an attitude! It’s about rising to the challenge of life and turning lemons into champagne.”
- Facing Cancer – advice for patients after diagnosis
Many major medical centers have a Ronald McDonald house nearby for families with children under treatment, making The Ronald McDonald organization a good resource to locate temporary residence options.
Other organizations that can provide housing support during medical treatments include:
|Healthcare Hospitality Network||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.|
|Joe’s House||Joe’s House 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.|
|Hospitality Homes||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.|
In addition, contacting the social services of any major medical center can frequently provide housing leads and discounts at local hotels.
- “Fibrolamellars of the World Unite!” Facebook group” – FWU 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. 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.
- “Fibrolamellar Cancer Foundation” Facebook page – FCF’s official Facebook page, which highlights the latest news and events for the community.
- Fibroregistry.org – The Fibrolamellar Registry is dedicated to 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.
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:
|Organization||Type of support||Overview|
|Financial support search||Cancer Financial Assistance Coalition is a coalition of organizations helping cancer patients manage their financial challenges.|
|Cleaning services||Cleaning For A Reason connects households battling cancer with local companies that would clean their home for free.|
|Medical cost assistance||The Health Well Foundation helps the underinsured afford critical medical treatments — because no one should go without essential care.|
|Financial support search||Medical Assistance Tool 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.|
|Scholarships – for childhood cancer survivors and siblings||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.|
|Prescription payment help||RXAssist can help patients learn about ways to use pharmaceutical company programs and other resources to help reduce medication costs.|
|Medical and living expense assistance||The Samfund provides support to young adults who are struggling financially because of cancer. Through direct financial assistance and free online support and education, helps young adults survive and move forward with their lives after cancer.|
Many relief, 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:
|Wish programs||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.|
|Patient retreat programs||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.|
|Wish programs||Dream Foundation serves terminally-ill adults and their families by providing end-of-life Dreams that offer inspiration, comfort and closure.|
|Respite programs||For Pete’s Sake Cancer Respite Foundation provides adult cancer patients, their caregivers and their children with a break from cancer at one of our respite locations.|
|Family memory creation||Inheritance Of Hope provides vacations to young families facing the loss of a parent allowing them to make memories.|
|Family memory creation||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.|
|Respite programs (Salt Lake City, UT area)||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.|
|Wish programs||Life Is Good No Matter What gives adults with advanced cancer a break and escape from their battle and diagnosis through a cherished experience.|
|Wish programs||Make-A-Wish strives to grant the wish of every child under age 18 diagnosed with a critical illness.|
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:
|Organization||Mission and overview|
|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.|
|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.|
|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.|
|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.|
|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; a resource center with free webinars, fact sheets, infographics and other helpful materials; plus patient assistance programs to help patients obtain life-saving or life-sustaining medications.|
- Cancer: 50 Essential Things to Do – Author Greg Anderson
- Crazy Sexy Cancer Tips – Author Kris Carr and Sheryl Crow
- Crazy Sexy Cancer Survivors: More Rebellion And Fire For Your Healing Journey – Author Kris Carr
- Emperor of All Maladies: A Biography of Cancer – Author Siddhartha Mukherjee – NY Times Book Review Top 10 for 2010
- Glimpses of Heaven: True Stories of Hope and Peace at the End of Life’s Journey – Author Trudy Harris
- What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope – Edited by Julie K. Silver, M.D.
- There’s No Place Like HOPE – A Guide to Beating Cancer in Mind-Sized Bites – by Vickie Girard
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.
- Crazy Sexy Cancer: Eat Your Veggies, Ignite Your Spark And Live Life Like You Mean It – Author Kris Carr
- The Cancer Fighting Kitchen – Authors Rebecca Katz & Mat Edelson
- One Bite At A Time: Nourishing Recipes for Cancer Survivors And Their Families – Author Rebecca Katz