We regularly meet to inspire and share expiriences and to discuss different fields of interest.
The first Adult MPS patients meeting was held on 4th and 5th October 2018 in Maritim hotel Gelsenkirchen, Germany. The goal of this meeting was to encourage adult MPS patients to be independent – stand on their own. This goal was achieved when adult MPS patients exchanged their experiences of living in different European countries and proposed solutions for improving their own lives. Participants age range was between 17 and 53 years from 8 different European countries.
Held in Belgrade, Serbia on 3rd and 4th July 2019. 20 MPS patient advocates representing national MPS societies and adult MPS patients from 12 European and one country from Africa participated.
Local PR & Media agency, AS communications, highly specialized in healthcare and rare diseases performed the training. Team of trainers consisted of PR expert, communicologist, actor, psychotherapist and medical journalist.
The second Adult MPS patients meeting was held from 17th to 20th October 2019 in hotel West Point in Verona, Italy. The goal of this meeting was to encourage adult MPS patients to be independent – stand on their own. Participants age range was between 17 and 55 years from 10 different European countries.
Videos for the International Mucopolysaccharidosis Day on 15.5.2019
Rare disease MPS? Challenge Accepted!
The challenges faced by people with mucopolysaccharidosis (MPS) on a daily basis are as varied as the diseases themselves.