7th South East European Rare Disease Conference

This conference took place on the beautiful lake Ohrid. Ohrid and Lake Ohrid were accepted as Cultural and Natural World Heritage Sites by UNESCO. Ohrid is one of only 28 sites that are part of UNESCO’s World Heritage that are Cultural as well as Natural sites.

Regional meeting for rare diseases patient advocates took place on 7-9 June, 2019 in Struga situated on the lake Ohrid, North Macedonia.

At the same time two other meetings took place: scientific meeting and Gaucher regional meeting. It was organized by Life with Challenges / Живот со Предизвици.

Around 300 participants mostly from the Balkan countries took place.

Danijela Szili represented Rett Syndrome Europe with the talk about what is there, when treatment is not existent and held a workshop for two Rett families from Macedonia.

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