"Hilfsorganisation" means "help organization" or "support organization" in German. MEF2C Hilfsorganisation e.V. is the German patient advocacy group for MEF2C families. The "e.V." (eingetragener Verein) indicates it's a formally registered non-profit association in Germany.
Global consortium: The MEF2C community has been working to create a "global consortium" of sister organizations across the UK, US, Australia, Germany, and potentially other countries. This coordinated approach is how the community is able to fund large studies like the Volare Study and push for clinical trials globally.