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…
The Inspiring Journey of Yannick Paredis
Yannick Paredis was born on March 7, 2004, appearing to be a perfectly healthy baby. His early childhood was filled with the joys of playing, learning, and growing. However, when he was five years old, subtle but alarming signs began to emerge. His teacher noticed that he struggled with his pen grip, and his parents…
Welcome to The Three New Board Members
Salvatore is a Board Member of the Italian Dystonia Association A.R.D. Salvatore works as a technical writer at an international company. He works daily in English, gathering and structuring complex information for a diverse audience. His involvement in technology and AI projects ensures that he remains current with innovative solutions. He possesses a broad understanding…
