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CureFFI.org
Personal blog · cureffi.orghealthscience
CureFFI.org is a personal blog at cureffi.org about health and science. Since 2013, 12 different Hacker News readers have linked it 14 times, most often “How pharmaceutical industry financial modelers think about rare diseases”. It is still writing: the last post was on 2026-10-22, and you can follow it by feed.
Too few sampled comments (10) to say how often HN recommends it.?
Why HN links it
HN readers link this blog for research on prion diseases, written by a couple working on Fatal Familial Insomnia, one of whom carries the gene. Posts also cover drug development economics and rare-disease finance.
Summarised by Claude from a sample of 10 HN comments that link here. Each comment is marked recommending, critical or neutral (citing without judging); how this works.
Not if, when.
Most-linked posts?
- How pharmaceutical industry financial modelers think about rare diseases3 people · 3 mentions · first linked 2019-04-30
- /about/3 people · 3 mentions · first linked 2021-12-07
What Hacker News says?
If you're interested in prions and some heavy science, I would highly recommend reading the research blogs of Eric and Sonia. http://www.cureffi.org/ and http://www.prionalliance.org/blog/ > Wife-husband team Sonia Vallabh and Eric Minikel are on a very personal mission to find a cure to prion diseases. When Sonia was diagnosed as a genetic carrier of a rare disease called Fatal Familial Insomnia (FFI), she and Eric…
Comment linking /
on “Prions, Nearly Indestructible and Universally Lethal, Seed the Eyes of Victims”Submitted How pharmaceutical industry financial modelers think about rare diseases as a story · 341 points
HN discussionIt has to do with the time value of money and long development timelines. Here is a great blog post from a scientist trying to find investors for drug to cure his wife's terminal disease.[1] >it takes a hundred dollars of drug revenue 17 years from now to motivate someone to invest one dollar today. No wonder drugs are expensive. That is a 10,000% return on investment required to break even. http://www.cureffi.org/2…
Comment linking /2019/04/29/financial-modeling-in-rare-disease
on “FDA approves first monthly injectable to treat HIV infection”Submitted CRISPR: Isn't that your problem solved? (2025) as a story · 2 points
HN discussionNot a direct answer to your question (because I don't know) but there's a couple doing research into a cure for prion disease because one of them (Sonia Vallabh) has it. Eric Minikel has been blogging about their research [1] [2], maintains an active Twitter presence [3] and has GitHub [4] repositories on the issue. The blog has a lot of information for anyone wanting to know more about bioinformatics, basic researc…
Comment linking /about/
on “When People Ate People, a Strange Disease Emerged”Submitted Why We Recommend 23andMe to Everyone We Know as a story · 1 points
HN discussionThe risk of cow->human BSE transmission is infinitesimal. Species barriers in prions are surprisingly strong and, for practical purposes, nearly impermeable [0]. In fact, the Prion Protein (PrP) in humans causes multiple distinct diseases including CJD, Kuru, and FFI. Infectious prion confirmations are probably highly influenced by glycosylation [1,2]. Even if this testing wasn't god awfully slow, it's unclear one l…
Comment linking /2013/05/05/prion-protein-n-linked-glycosylation-review-and-assessment-of-therapeutic-potential/
on “Doctors investigate mystery brain disease in Canada”Other folks have mentioned CureFFI, but I would like to second that suggestion. This is a couple that has committed their lives to understanding and curing a rare condition that personally affects one of them. https://www.cureffi.org/about/ Sonia: https://www.broadinstitute.org/bios/sonia-vallabh Eric: https://www.broadinstitute.org/bios/eric-minikel They are also hiring: https://broadinstitute.wd1.myworkdayjobs.com…
Comment linking /about/
on “Ask HN: How to be my own genetic disease researcher for my partner?”There was another really good one on HN a while back about a husband doing research to try to save his wife from FFI. This was it and seems relevant: http://www.cureffi.org/2019/04/29/financial-modeling-in-rare...
Comment linking /2019/04/29/financial-modeling-in-rare-disease/
on “Ask HN: How to be my own genetic disease researcher for my partner?”In case anyone hasn't seen it, the story behind this couple is interesting: https://www.cureffi.org/about/
Comment linking /about/
on “Clinical trial of a prion disease drug candidate begins enrolling participants”An interesting video about human prion diseases that, among other things, discusses epidemiology ("1 in 7000 is, actually, a lifetime risk" [in the U.S.]): "Creutzfeldt-Jakob Disease and Other Prion Diseases - Brian Appleby, M.D." https://www.youtube.com/watch?v=4vyuby6gibs&t=328s Also, some links from my older comment to "Oregon has legalized human composting" article: https://news.ycombinator.com/item?id=27555105…
Comment linking /2012/12/13/the-rise-and-fall-of-pentosan-polysulfate-in-prion-disease/
on “New Brunswick’s Mystery Disease”> it's also just an amazing human story of tenacity and curiosity. It's hard to talk about them without getting emotional once you read their story. In their own words: https://www.cureffi.org/about/
Comment linking /about/
on “An epigenetic editor to silence genes”I would say that there is a common misunderstanding of: A) the viability initial drug discovery and subsequent development costs, and B) The time value of money. For A) success rates of 5000:1 are not uncommon. Discovery is at the very beginning of this process [1],which can take 12–15 years and cost in excess of $1 billion [2] B) A 1 to 5 billion dollar return on a 300 million acquisition is likely a loosing propos…
Comment linking /2019/04/29/financial-modeling-in-rare-disease/
on “Expanded access programs for Remdesivir”
