Breast Cancer Screening Post-Mastectomy Study
You are being invited to participate in a questionnaire study being run by Dana-Farber Cancer Institute. This study consists of a
Dollar For – Financial Assistance Webinar
Watch our latest webinar: Navigating Hospital Financial Assistance, presented by Dollar For. Hosted by the LFS Association, this webinar covers the
Larry Ingrassia – A difficult and inspiring journey of discovery
Lawrence Ingrassia, author of A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery, talks about the two-decades long
Maria Regina
I was diagnosed with Li-Fraumeni syndrome after a severe and very rare pancreatic cancer. I was referred to an oncogeneticist,
William
My late son, Raphael Lee, was first diagnosed with rhabdomyosarcoma on his left forearm in 2008 when he was
Camila
In December 2022, my mother was diagnosed with retroperitoneal leiomyosarcoma after experiencing severe abdominal pain. This led to the
A Fatal Inheritance – How a Family Misfortune Revealed a Deadly Medical Mystery
Larry Ingrassia’s, A Fatal Inheritance, is the most comprehensive biography of Li-Fraumeni syndrome for the lay reader to date.
LFSA Co-Founder Debbie Soprano Honored by Boston Children’s Hospital
The Li-Fraumeni Syndrome Association (LFSA) is proud to announce that Co-Founder and Board Member Debbie Soprano has been recognized with the 2025 Employee
Breast Cancer Screening Post-Mastectomy Study
You are being invited to participate in a questionnaire study being run by Dana-Farber Cancer Institute. This
Dollar For – Financial Assistance Webinar
Watch our latest webinar: Navigating Hospital Financial Assistance, presented by Dollar For. Hosted by the LFS Association,
Larry Ingrassia – A difficult and inspiring journey of discovery
Lawrence Ingrassia, author of A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery, talks
The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome
Data analysis indicated that the perceived benefits of screening included early detection, increased peace of mind, centralized care, empowerment through knowledge, and a sense that
Genetic Counselor Recommendations for Cancer Predisposition Evaluation and Surveillance in the Pediatric Oncology Patient
Published by AACR in 2017, this publication was written by some of the invaluable members of LFSA's Genetic Counseling Advisory Group. In this article,
Parent decision-making around the genetic testing of children for germline TP53 mutations
Despite limited empirical evidence on the benefits and risks of TP53 testing in childhood, most parents in this study readily chose testing and identified multiple
Li-Fraumeni syndrome: report of a clinical research workshop and creation of a research consortium (and the LFS Association)
On November 2, 2010, the National Cancer Institute convened a workshop at the National Institutes of Health in Bethesda, Maryland, bringing together clinicians and
Monograph on Li-Fraumeni Syndrome
Monograph on Li-Fraumeni syndrome written by Dr. David Malkin and edited by Arnold Levine: In 1969, Li and Fraumeni described a notable cancer predisposition syndrome.
The history of p53
By Thierry Soussi The history of p53 and the different interpretations of its role in cells highlight how scientific paradigms can shape research fields. It
