Select Language:Translation

Financial Concerns

CancerCare’s Co-Payment Assistance Foundation (video) distributes over $15 million dollars in co-payment and financial assistance for chemotherapy and targeted treatment drugs every year. Focus on recovery and visit for more information.

For many of us, there is no “perfect” health care insurance coverage.  With the Affordable Care Act in mind, Global Genes developed their “Navigating Health Insurance” publication as part of their Rare Toolkits product line.  See if anything in their “toolbox” can help you at this time!

Cure Today magazine: Considering Cost – What’s an immunotherapy worth? The oncology community is taking action on controlling the costs of immunotherapy. See the end of the article for some resources that may be able to provide financial help. (July 2015)

AACR’s Cancer Today: The Cost of Cancer – expensive treatments can leave patients with a mountain of debt. Resources are available to help. (Summer 2015)

LFS patients often struggle with insurance companies over coverage of care. Under certain criteria, the Affordable Care Act can require insurance companies to cover routine medical costs associated with cancer clinical trials. This is another excellent reason to participate in a clinical trial. Your medical facility may be able to assist with eligibility to participate in one.

Having trouble with insurance coverage of annual screenings as an LFS patient? In consideration of the challenges of LFS and supporting research (reference the Lancet article below as supporting evidence), MRI screenings have become the new standard of care adopted by many of the institutions that care for pediatric LFS patients. Please encourage your insurance provider to contact any one of the centers referenced as LFS patient care providers on our webpage for guidance.

National Cancer Institute’s Cancer Topics:  resources for addressing social, emotional, and financial issues in Coping with Cancer (December 2014)

Need assistance? Looking to volunteer?? The Patient Advocate Foundation provides professional case management services to Americans with chronic, life threatening and debilitating illnesses. See “Patient Services” and all they can do to help with insurance coverage and access to health care.

In the United States since 2014, the Affordable Care Act provides that, for the most part, insurance companies cannot deny coverage for pre-existing conditions, providing insurance is sought during open enrollment.

LFS Association

We are families, like you who have been devastated by the effects of Li-Fraumeni Syndrome, a hereditary cancer predisposition syndrome. Our hopes are to educate, raise awareness and find better screening programs and treatments for LFS.


Medical Resources

We've compiled a list of doctors available to
answer your questions, LFS support and
treatment. They specialize in many different
areas, which have been listed with their


LFS News

WETB’s Gayle Ong was one of several reporters covering the event and story of LFS and Mo Songs for Kerry.

Read More…

Community Events

Carly Grant – Mohawk Hudson River Marathon 2017
Support Carly and the Li-Fraumeni Syndrome Association as she raises money and trains for the Mohawk Hudson River Marathon on October 8th!


LFS Webinars

Check out our library to watch past LFS
webinars, and to find out about
upcoming webinars!

Learn more...

LFS Awareness Brochure

Myriad Genetics is proud to partner with LFSA to launch the global LFS Education and Awareness Campaign!