Facing Li-Fraumeni Syndrome? You’re Not Alone.
When confronted with Li-Fraumeni Syndrome (LFS), it’s natural to have many questions:
- Could I be carrying a faulty gene?
- How do I find out for sure?
- How should I talk to my family about it?
- What does this mean for insurance?
- Are my children at risk?
ELFF-NL is here to guide you.
Our website offers a comprehensive list of FAQs (frequently asked questions and answers) to help you navigate your journey. We also connect you with other LFS carriers, so you never have to face this alone.
About ELFF-NL
ELFF-NL was founded by the Stichting Diagnose Kanker (SDK), led by Tom and Tonia van der Wal. Tom, born in 1952, comes from a family affected by Li-Fraumeni and is a carrier of the faulty P53 gene himself.
Thanks to ELFF-NL’s efforts, significant milestones have been achieved, including:
- The development of an LFS care standard.
- A dedicated GP brochure to educate healthcare providers.
- Ensuring all LFS carriers receive an annual total body scan.
These accomplishments are the result of relentless dedication and hard work.
Support Our Mission
Your financial support makes a real difference. Every donation goes directly toward improving the lives of families affected by Li-Fraumeni. When donating to the Stichting Diagnose Kanker, please specify: “t.a.v. Li-Fraumeni” to ensure your contribution is directed to the right cause.
Yes, I want to support ELFF-NL!