End of June the annual meeting of the Boston Scientific Foundation Europe (BSFE) was held in the Boston Scientific offices in Milan, Italy. BSFE helps communities improve their health and well-being by supporting innovative digital health solutions. The Foundation was established in 2018 with the aim of having an immediate and lasting impact by supporting European non-profit organisations….
Dystonia Europe at Expert Training Forum 2025
Mid June Dystonia Europe Executive Director Monika Benson took part in the Expert Training Forum 2025 in Munich, Germany. Together with Stacie Broek, a stroke survivor, they joined a roundtable session in the morning of the first day. They shared patient views on diagnosis, treatment and living with the disease. There were questions from the…
Getting the right care: Physiotherapy for dystonia in the UK
Physiotherapy is an important part of dystonia management, with research demonstrating it can enhance botulinum toxin injection outcomes, helping reduce pain and improving daily functioning. However, in the UK, whilst neurological physiotherapy is recommended in national pathways, patient access remains unclear. Previous research has highlighted challenges in physiotherapy access for dystonia patients, with many only referred if…
EPF AGM and Leadership Meeting
On 24th and 25th May, EPF (European Patients Forum) held their AGM (Annual General Meeting) in Brussels, Belgium. EPF is an independent, non-profit, non-governmental umbrella organisation of patient organisations across Europe and across disease areas. EPF has 78 members in disease-specific patient groups. EPF is active at EU level and national coalitions of patients. Dystonia…
Volunteers Meet for Internal Training in AMADYS
AMADYS, the French association for dystonia patients, gathers its volunteers every two years for a face-to-face day. This year it was January 24th in Paris. Volunteers include our regional delegates, specialists with specific missions (social networks, etc.), and board members. Guest speakers may include specialists on medical or care issues relating to dystonia and children’s…
