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.
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:
Organizations that can provide housing support during medical treatments include:
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:
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:
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:
Many organizations have been established to specifically help adolescents and young adults navigate their journey with cancer. Notable AYA organizations include:
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:
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:
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:
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:
Several initiatives have been launched to increase the amount of data about FLC that is available to support research. Patient participation in these data-gathering efforts is important — once a critical mass of information is assembled, these studies can play a major role in closing gaps in our knowledge of the disease. Please click here to learn more about the benefits of registries and natural history studies, and to access more detailed information about the four initiatives briefly described below:
Please note that FibroFighters Foundation has requested that we no longer include their contact information here. Similarly, xCures has requested that we remove their listing, since the company has stepped away from supporting direct-to-patient registry projects, and now is primarily focused on other activities.