The patient voice is being heard at ENMC workshops!
The ENMC encourages that persons directly involved with a neuromuscular condition participate in ENMC workshops. They are the ´experts´with a neuromuscular condition on a day-to-day basis. They can share their daily experiences in a workshop and explain to researchers and clinicians what priorities should be given to research.
In order to explain their active role as a participant, the ENMC has developed a Patient Toolkit for patients with guidelines and information about the general course of a workshop.
Organisers of a workshop have an important role in managing a succesfull patient participation. This starts with proactively inviting a good spokesperson directly involved with a neuromuscular condition for the workshop meeting. In addition, the organiser as a chair of the meeting should secure that every participant of the workshop, including the person directly involved with a neuromuscular condition, can contribute to the discussions. Therefore, a Patient Toolkit for organisers has also been developed.
Both toolkits can be found under Step 4 in the Application process
John Paul Catajar at the 217th ENMC workshop on RyR-1 related myopathies held on 29 - 31 January 2016
"As a parent of a child with a severe congenital neuromuscular condition, I must convey my sincere gratitude to the ENMC for organising the workshop into RYR1 related myopathies at Naarden. This forum provided the perfect platform for the worlds leading experts to present their latest research, share ideas and develop theories in a collaborative way. It is truly reassuring to see first hand how so many dedicated individuals are working together with the ultimate objective of finding effective treatments and cures for those that are affected by this and other similar conditions".
"To be present at an ENMC workshop as a patient, makes the condition real, the patient gets a face. Spending the weekend together, having dinner together shows how disabling my condition is for patients like me". Said Nynke Koelma, who joined the 216th ENMC workshop on FKRP-related muscular dystrophies.
"For us as patients, it is important to register in the FKRP-registry to collect more data about our disease and to provide researchers the tools to start a new clinical trial".