Table 2 Search strategy

1. Search with the following search terms: rare disease OR rare disorders

2. Search with the following search terms: Patient Involvement OR Participatory Research OR Integrated Knowledge Translation OR Community Participation OR Patient Engagement OR Patient and Public Involvement OR Co-production OR Knowledge Translation OR Consumer Involvement OR Patient Organizational Involvement OR Users Involvement OR Patient Partner research OR Patient and Service Engagement OR Collaborative research OR Patient Partner Research Or IKT OR End Of Grant IKT OR Knowledge Translation OR Knowledge To Action OR Knowledge mobilization OR Patient Partnership Research

3. Finally, we combined searches 1 and searches 2

Additional references were sought by examining the citations in included articles and consulting expert