This important event will allow MECP2 gene duplication syndrome specialists, scientists and families to meet and discuss current developments in patient care and treatment. All family members, affected children, siblings and carers are welcome. [...]

On 14 June, a one-day bike ride will take place in Gramatneusiedl (Lower Austria, near Vienna) between 9am and 12pm. As part of this event, we can take care of the refreshment station. Whether you're coming by bike, on foot or by car, we'd be delighted to welcome you at the refreshment station. All [...]

We are proud to be one of 44 rare disease associations and patient advocacy groups in Germany and Austria to join forces again for the RARE DISEASES RUN 2026! The RARE DISEASES RUN is Europe's largest virtual running race for rare diseases.