Ultra-Rare Epilepsy: Lafora Disease - José Serratosa

[@TorieRobinson]

Lafora disease is just such a horrific epilepsy - what do you think? How can we make pharma companies invest in research to treat it and save lives?

[@Sydopath]

Tragic that kids have to endure this with little medical support. The parents must feel powerless.

[@TorieRobinson]

Right. We really do need to pressure pharma to support research into this epilepsy.

[@Sydopath]

@@TorieRobinson Pharma will invest in research if there is either a big enough market to give them returns, or they are confident of being able to charge the earth for prescribed meds at a level that will give them payback within 3 years Alternatively, the government (or an international collaboration of govts) can subsidise the research and/or support the sale price for a period of time. It’s all about £$¥€

[@TorieRobinson]

Yep…