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.
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This network provides support and information for individuals with hereditary cancer syndromes, including LFS, in Italy.
A UK-based organization offering support, information, and resources for individuals and families affected by Li-Fraumeni syndrome.
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
Expertise centrum Li-Fraumeni
Comprehensive cancer center with LFS expertise
Provides guidelines and connects professionals specializing in hereditary cancer syndromes
Coordinates research initiatives across Europe for rare diseases including Li-Fraumeni syndrome.
Funds research into rare cancer syndromes and provides information resources
Coordinates care for rare genetic disorders
Offers genetic services for hereditary conditions.
Provides genetic testing and counseling.
Their Division of Genetics offers services for hereditary cancer syndromes.
Provides genetic services for cancer syndromes.
Offers genetic counseling and testing for hereditary cancer predisposition
Their Department of Medical Genetics provides counseling for hereditary cancer syndromes
Advocates for patients with rare diseases, including Li-Fraumeni syndrome.
European cancer Patient Coalition ECPC