Turning the tide for rare disease

https://rarerevolutionmagazine.com/category/rare-insights/turning-the-tide-for-rare-disease/ Tobias Hagedorn, secretary of the European Society for Phenylketonuria (ESPKU)shares how they are challenging European legislation’s view of patient needs. By bridging policy, personal experience and scientific insight, they’re fighting to block proposed legislative changes that could redefine ‘unmet medical needs’ potentially impacting thousands and stalling research https://rarerevolutionmagazine.com/leave-no-one-behind/