3 ms·
My sister has a very serious, rare, disease. No companies have incentives to innovate in this field (pharma or whatever).
by chkte 9y ago
My sister has a very serious, rare, disease. No companies have incentives to innovate in this field (pharma or whatever).
- melling 9y agoThere are lots of rare diseases that need someone to find funding and push the research. Saw this one in the WSJ: https://themighty.com/author/luke-rosen/ https://themighty.com/author/luke-rosen/ https://www.wsj.com/articles/on-the-way-to-a-rare-disease-cure-parents-tackle-the-high-price-tag-of-research-1504094400 https://www.wsj.com/articles/on-the-way-to-a-rare-disease-cu... And this one on ABC News tonight: https://donate.curecmt4j.org/campaign/cure-cmt4j-advancing-gene-therapy-for-rare-diseases/c117605 https://donate.curecmt4j.org/campaign/cure-cmt4j-advancing-g...
- DoreenMichele 9y agoIn the US, the FDA tries to incentivize it: https://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/ucm2005525.htm https://www.fda.gov/ForIndustry/DevelopingProductsforRareDis... The problem is this results in drugs that cost a fortune and still only helps a small percentage of sufferers, like the $300k drug for CF that only helps 5% of CF patients. http://www.cbc.ca/beta/news/canada/nova-scotia/cystic-fibrosis-breakthrough-pills-have-300k-price-tag-1.2453058 http://www.cbc.ca/beta/news/canada/nova-scotia/cystic-fibros...