Chair: Professor John Vissing, Neuromuscular research unit, Rigshospitalet

Transcription

1 Program for meeting of Danish Consortium for Neuromuscular Diseases Monday 4 September 2017 at Musholm Ferie Sport Konference, Korsør Theme: Medical treatment Chair: Professor John Vissing, Neuromuscular research unit, Rigshospitalet Arrival and light breakfast Welcome, Jes Rahbek, The Rehabilitation Centre for Neuromuscular Diseases Medical treatment what s out and what s in the pipeline (Natalie Goemans, Belgium) Medical treatment in SMA from the perspective of Thomas Koed Doktor, researcher, representative of the patient organization and patient with SMA Short break Discussion about medical treatment in Scandinavia for DMD and SMA (Charlotte Olesen and Peter Born) Experience from Sweden (Mar Tulinius) Who are we treating in Denmark? Organization Uniformity of assessment protocols Accumulation and collection of data Lunch International and national registries a platform for collaboration Nathalie Goemans Peter Born Pediatric Neurologist, Rigshospitalet John Vissing Neuromuscular research unit, Rigshospitalet Ulla Werlauff RCFM Coffee break Cases from participants including updates on previous cases (Diagnostics (unsolved/solved) or experiences to be learned from or discussed) Update patients in DK treated with Spinraza Peter Born Adult patients with DMD, a collaborative check-up (Annette Torvin Møller, Jes Rahbek) Dynamic movement orthoses, a potential approach to Shoulder problems in patients with FSHD Cases and projects form RH (Please send cases to Ulla Werlauff, ulwe@rcfm.dk, before 1 September)

2 End of seminar Dinner for participants in the Brickless-meeting

3 BRICKLESS CENTRE Tuesday, 5 September Theme: Ageing with NMD a look to the neuromuscular future Language: English Moderator: Jørgen Jeppesen, RCFM Welcome and introduction (Jes Rahbek, director RCFM) The growing population with NMD (Ulla Werlauff, Denmark) The uncertain future implications for people ageing with disabilities (Eva Jeppsson-Grassman, Sweden) Future perspectives on medical research (Nathalie Goemans, Belgium) Coffee break Welfare technology (Ivan Kjær Lauridsen, Denmark) Losing functions and managing uncertainty (Torun Vatne, Norway) Patient perspective on losing functions and managing uncertainty (Antoniett Vebel Pharao, Denmark) Lunch Two workshops/interactive sessions of 55 minutes duration each Workshop 1: Pharmaceutical treatment of NMD Presentation of a case and discussion. Using the case as point of departure, we will discuss the challenges of new medications and how they affect our way of thinking rehabilitation. Moderators: Jørgen Jeppesen and Annette Mahoney Workshop 2: Welfare technology Elin Dögg Óskarsdottir and Sofie Sejer Skovbo will present and demonstrate the latest developments in welfare technology and participants will have the opportunity to try some of the new devices. Moderator: Ann-Lisbeth Højberg Coffee/tea and snack Ethics and dilemmas related to the prolongation of life using medical and technological solutions (Jes Rahbek)

4 Break Lecture and reception in honor of Chief Medical Officer Jes Rahbek s retirement from the rehabilitation centre Network, collaboration and participation of patients in rehabilitation (Nathalie Goemans, Belgium). Nordic cooperation what have we learned so far (Irene Lund, Norway) Developing Rehabilitation in interaction with a Patient Association (Anita Kruse, Denmark) Festive dinner

5 BRICKLESS CENTRE Wednesday, 6 September Language: English/Skandinavisk Moderator: Presentation of projects, Far, Mor og Muskelsvind, Ann-Lisbeth Højberg, Pia Myrup, RCFM Axial myopathy in patients with neuromusuclar diseases, Karen Schmidt Rudolf, RH Anti-Gravity Aerobic Training in Patients with CMT Types 1A and X, Kirsten Lykke Knak, RH Dynamic movement orthoses as a means to ease pain in patients with FSHD, Pia Zinck, RCFM Is Grip Strength a Useful Tool to Determine Changes in the Condition of Patients with Chronic Inflammatory Demyelinating Polyneuropathy?, Kirsten Lykke Knak, RH Föräldrars råd till personal som arbetar med barn med SMA, Elin Hjorth, Ersta sköndal Bräcke Högskola Adding diversity to the Danish labour market, Simon Jespersen, Muskelsvindfonden Coffee break Sports as rehabilitation (Tine Højgaard Jensen, Denmark) Summary of meeting and Brickless Centre 2018/2019. Jes Rahbek, RCFM Sandwich and goodbye