Came across some ground-breaking news on the rare disease front the other day. Read this article from Drug News. It’s all about how the French patient movement is leading to significant progress in drug delivery, including setting up their very own pharma company. Here’s what it says:
‘The French Association against Myopathies (AFM) announced Thursday that its new center-Genethon Bioprod will be “operational in 2012″ and produce “drug delivery to a pre-industrial scale”.
The AFM, however, is still awaiting the status of pharmaceutical company, it needs to start this production.
Genethon, created by the AFM and 90% financed by donations from the Telethon, has since 2006 led “clinical trials with drug-delivery products in its production center, the establishment of gene and cell therapy (ETGC)” , said the AFM in a statement.
A new regulation, dated March 22, “will go further and seek the status of a pharmaceutical for its new production center,” says the association.’
Read the full article here: http://www.drugsnews.org/afm-telethon-to-produce-drugs-after-confirmation/
Nick says: This is very significant for the rare disease patient movement. The Telethon is the amazing patient-led organisation that carries out a huge fundraising drive each year, raising nearly 100m euros from the French public. Patient groups such as the AFM, funded by the Telethon, are becoming increasingly impatient at the time it takes to develop new drugs for rare diseases. Hence, rather than wait for others to do it, they’re doing it themselves.
That’s entrepreneurship for you – dedicated, committed, innovative, and willing to take significant risks. A shining example.