Rare diseases are becoming quite common. Or rather, research has now finally caught up and enabled us to build cures for a long range of genetic disorders and diseases, that would have been impossible to cure or treat just a few years ago. However, the production pipeline for these treatments is still missing, so the cost pr. treatment is high and the health systems have yet to embrace them all.

This was the background for the amazing visit to Denmark by Canadian entrepreneur and patient advocate Terry Pirovolakis that managed to do the impossible in record speed; he managed to find both funding and cure for his son Michael, suffering from SPG50. Having treated Michael, Terry has been on a quest to help other children across the world and also transform the pipeline for a series of other rare diseases.

NWA helped the Danish August Foundation to organise meetings with stakeholders in the Danish life science ecosystem – and also learned a lot about hope, perserverance, new potentials of collaboration between Canada and Denmark, and more.

Read more about the August Foundation here – and about the race against time to help Danish August from benefitting from a cure that are currently just waiting in a freezer. You can make a difference too by donating to the August Foundation. This will help fund this mission and add to the ability for gene therapy and personalised medicine to reach people in a just and timely manner.