The science
What is currently known about the gene, the cohort, and gene therapy progress — drawn from published literature.
Read the scienceNEDAMSS · IRF2BPL · Israel
Four families in Israel. We are documenting every one.
We are Libi's parents. We built this site to help the small community of families in Israel living with NEDAMSS (caused by variants in the IRF2BPL gene) — to find each other, to advance research, and to make sure no Israeli child is missed when treatment becomes possible.
Libi's story
Libi's story will go here — written by her parents. A few short paragraphs about who she is, when the diagnosis came, and what life looks like today. The point of telling it is so that other families looking for answers recognize themselves and reach out.
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Real photo to be added
Where the Israeli families are
There are currently 4 known families in Israel. Not all are shown on the map yet — we add a pin only with each family's consent.