Joining the CJD Foundation Israel as remote Technical Lead
New chapter · Volunteer work Gilles · 19 October 2026 This blog has been quiet for a while and for obvious reasons. I'm bringing it back with the best reason I could ask for: I've taken on a volunteer role as remote Technical Lead at the Creutzfeldt-Jacob Foundation Israel , building the data platform behind a rare-disease research biobank. The data we're organising is, at its core, this: genomes, and everything that surrounds them. The foundation The CJD Foundation Israel is a non-profit patient-advocacy organisation, founded in 2008 by Alice Anane after she and her family learned they carry the mutation for genetic Creutzfeldt-Jakob disease (gCJD), a rare and fatal prion disease. Israel has a distinctively high prevalence of the genetic form, particularly among North African families. The foundation supports affected families, raises awareness, and pushes research, early diagnosis and treatment forward. It also co-founded and leads Israel's na...