Saturday 26 August DDG Dystonia Dystonie Gesellschaft had a member meeting in Fulda at hotel Esperanto. This also marked 30 years of the organisation and in the evening there was a Anniversary Dinner. Dystonia Europe was invited and President Edwige Ponssel and Operations Manager Merete Avery attended. The meeting started 9.15 in the morning with…
Boston Scientific Foundation Europe Celebrating Five
Five years ago the Boston Scientific Foundation Europe (BSFE) was established and set up to champion the uprising of digital health by supporting innovative solutions that aim to improve people’s health and well-being. In those five years 20 projects have been funded from 16 non-profit organisations in Europe reaching more than 50 countries in the…
EPF Webinar on Medicine Shortages
The New EMA Mandate On 23 June European Patient Forum (EPF) held a webinar on shortages of medicinal products. Elena Balestra, Head of Membership, Governance and Capacity Building at the European Patients’ Forum, welcomed all attendees and opened the webinar. Claudia Louati, Head of Policy at the European Patients’ Forum held a brief introduction on…
ADDER Comes to an End
I have very mixed feelings as I write this notice, I am sad but proud at the same time. I help to run the charity Action for Dystonia, Diagnosis, Education and Research (ADDER) in the North East of England, UK. We held an extraordinary general meeting recently to discuss the closure of the charity. The…
Cervical Dystonia Patient Journey Performance at EAN Congress
At the beginning of July the EAN (European Academy of Neurology) 2023 Congress was held in Budapest, Hungary. DE Executive Director Monika Benson attended the event. As reported earlier Dystonia Europe has together with Ipsen and ERN-RND (European Reference Network for Rare Neurological Diseases) developed the Cervical Dystonia Patient Journey which was published in 2022….
