Other Resources

This page contains lists of resources that we have found helpful.  Anyone with other names or resources, please let us know.

Resources for patients

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.

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.

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 NetworkHealthcare 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 HouseJoe’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 HomesHospitality 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.

  • Facebook – “Fibrolamellars of the World Unite!” This is a closed 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.
  • Facebook – “The Fibrolamellar Cancer Foundation” facebook page
  • Fibroregistry.org – The registry is dedicated to helping patients advance research into fibrolamellar by sharing their medical information with researchers.

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:

OrganizationType of supportOverview
Financial support searchCancer Financial Assistance Coalition is a coalition of organizations helping cancer patients manage their financial challenges.
Cleaning servicesCleaning For A Reason connects households battling cancer with local companies that would clean their home for free.
Medical cost assistanceThe Health Well Foundation helps the underinsured afford critical medical treatments — because no one should go without essential care.
Financial support searchMedical 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.
Prescription payment helpRXAssist can help patients learn about ways to use pharmaceutical company programs and other resources to help reduce medication costs.
Medical and living expense assistanceThe 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:

Organization TypeOrganization focus
Wish programs3 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 programsDeliver 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 programsDream Foundation serves terminally-ill adults and their families by providing end-of-life Dreams that offer inspiration, comfort and closure.
Respite programsFor 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 creationInheritance Of Hope provides vacations to young families facing the loss of a parent allowing them to make memories.
Family memory creationJack 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 programsLife Is Good No Matter What gives adults with advanced cancer a break and escape from their battle and diagnosis through a cherished experience.
Wish programsMake-A-Wish strives to grant the wish of every child under age 18 diagnosed with a critical illness.

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:

OrganizationMission and overview
CaringBridgeProvides a forum for updates on the patient’s condition and a platform for supportive comments from site visitors.
Lotsa Helping HandsA central place to coordinate meals and help for friends & family.
PostHopeCreate a free support website to journal your story, fundraise & rally patient support.
CareCalendarFree website to organize meals and other help for families during a time of illness, recovery or a life changing event.

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.

  • FirstDecents.org – challenging outdoor adventures for young adults with cancer
  • ImermanAngels.com – one-on-one support
  • LiveStrong – Lance Armstrong Foundation which includes information about fertility after cancer
  • molecularmatch.com – This site provides information on specific treatments for specific mutations and cancers.
  • chemocare.com – Information about chemotherapy, its effects and side effects, an initiative of The Cleveland Clinic and cancer survivor Olympic skater Scott Hamilton.
  • NORD WEBSITE – National Organization for Rare Diseases is specifically devoted to information for patients and families dealing with rare diseases, including rare cancer.
  • StupidCancer.org –  focuses on young adult cancer – advocacy, activities and networking
  • The SAMFund.org – Through direct financial assistance as well as online support, The SAMFund gives young adult cancer survivors the tools and resources to overcome their financial challenges and move forward with their lives.
  • 15-40.org – focuses on cancer self-awareness for earlier detection of young adult cancer