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The European Li-Fraumeni Families Foundation (ELFF) is dedicated to empowering and supporting families affected by Li-Fraumeni syndrome across Europe. Our mission is to serve as a central information hub, offering valuable resources, the latest developments, and practical guidance on screening protocols. By connecting families with local organizations and providing a platform for knowledge-sharing, ELFF strives to foster a strong, informed community that can navigate the challenges of Li-Fraumeni syndrome with confidence and hope. Together, we aim to improve care, raise awareness, and enhance the quality of life for those impacted by this rare genetic condition.
Stichting Belangengroep Li-Fraumeni Families
European Li-Fraumeni Families Foundation ( ELFF)
Chamber of commerce 54841917 The Netherlands
Established and maintained by the Stichting Diagnose Kanker (SDK). This is a registered and government-recognized foundation with ANBI (Public Benefit Organization) status.
Houses the Department of Cancer Epidemiology and Genetics
Connects families affected by childhood cancers, including those caused by Li-Fraumeni syndrome.
EUROPE
Provides resources and connects patients to genetic specialists across Europe.
Description: ERN GENTURIS is a European network focused on genetic tumor risk syndromes, including Li-Fraumeni syndrome. It provides expertise, resources, and collaboration for patients and healthcare professionals.
Patient organisation
Offers genetic counseling and testing for hereditary cancer syndromes.
Funds research into rare cancer syndromes and provides information resources
Coordinates care for rare genetic disorders
Has a clinical genetics department that handles rare cancer syndromes
Provides genetic services for cancer syndromes.
Their Center for Genomic Medicine specializes in hereditary cancer syndromes.
Their Division of Genetics offers services for hereditary cancer syndromes.
Can connect patients with specialized genetic services for Li-Fraumeni syndrome.
Houses the Clinical Genetics department that provides services for Li-Fraumeni patients.
Coordinates research initiatives across Europe for rare diseases including Li-Fraumeni syndrome.
Their Hematology, Oncology and Transfusion Medicine Center provides services for hereditary cancer syndromes.
This network provides support and information for individuals with hereditary cancer syndromes, including LFS, in Italy.
Their Department of Medical Genetics provides specialized services for LFS patients.