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Table 2 Key messages of the 235th ENMC workshop

From: “Be an ambassador for change that you would like to see”: a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease

Main levels for proactivity
• All stakeholders involved in shared decision making require education:
 - People affected by a neuromuscular disorder- at any age
 - Families, healthcare professionals and physicians, parents, caregivers, regulators, industry
• A cultural change is needed and everyone has to act as ambassador for:
 - Respectful communication among all partners
 - Independent contribution of all partners
 - Societal acceptance and support
 - Pro-active role of all stakeholders, including patients, caregivers and parents
• Structural, process and legislation changes should be promoted by:
 - Learning from models developed by other disease societies and patient organizations
 - Including disease-specific patient representatives in advisory boards and ethics committees
 - Including patient organizations and patient representatives in every stage of clinical trials
 - Setting dedicated funding by national and or international institutions to support patient involvement in medical research activities