Physiotherapy / digital care / patients as partners
Chairs:
Tim Vangansewinkel and Alexander Leysen
Speakers:
- 14:00 OS-1: Gita Ramdharry (National Hospital for Neurology & Neurosurgery, UCLH, UK)
Physical management of CMT: understanding the mechanisms of rehabilitation approaches while supporting people to live well.
- 14:30 OS-2: Helena Pernice (Charité - Universitätsmedizin Berlin, Germany)
Digital care - challenges and opportunities for a CMT community “without borders”
- 15:00 OS-3: Katherine Forsey (Charcot-Marie-Tooth Association)
Patients as partners in research - The CMTA experience
- 15:30 OS-4: Alexander Leysen (Spierziekten Vlaanderen, Belgium)
Objectives, work and visions of a patient organisation
Objectives:
- Present and discuss some essential aspects of physiotherapy for patients with neuromuscular conditions and, in particular, CMT, including new developments
- Develop tools of telemedicine to boost effective cooperative treatment, research and development
- Mobilize and change the role of patients: Direct involvement and equitable inclusion of patients as active partners in clinical practice and throughout the entire research and development processes related to diagnostics and therapies
Tasks and deliverables:
- Conceptualizing “patients as partners”
- Strategy and recommendations for the active involvement and participation of patients in iNMD therapy and R&D processes
- Telemedicine in iNMD: Digital care and other aspects of telemedicine to provide for direct communication between patients and specialists - challenges and opportunities