This section discusses insights from specific questions regarding collaboration, communication and open science between rare disease organizations.

*Note that most of the survey questions were not required, so the total number of responses is noted for each graph, as they vary.

Collaboration with other organizations

Participating organizations were asked how many other organizations (regardless of type) do they regularly collaborate with on a regular basis, either for research or community-centered projects. Most organizations seem to have a small collaboration circle, focusing on just five or less (51 organizations) or five to ten (41 organizations) close collaborators.

n (organizations): 130

Collaboration activities

For the top 5 collaborators that our ROADMAP organizations listed in the survey, the top activity that the collaboration is based around was sharing prior experiences that can inform future decision making, such as their drug repurposing experience, clinical trial design, resource development, etc. The second and third top activities reported are sharing a research agenda and other resources.

*Note: this question merges data from 1-5 collaborator organizations, listed per ROADMAP participating organization. These numbers vary by how many organizations answered each question and how many collaborators they listed

n (organizations): 114

Existence of same rare disease-focused organizations

We were also interested in collaboration among organizations focused on the same/similar rare disease or one pertaining to the same genetic mutation. The majority of our organizations (80) reported the existence of these types of organizations in their rare disease space.

n (organizations): 130

Collaboration among same rare disease-focused organizations

Furthermore, we were curious whether there is close collaboration between organizations focused on the same/similar rare disease or one pertaining to the same genetic mutation or if it was more of a competitive environment. Most of the organizations (67) did report that they collaborate on a regular basis, though 13 reported that they do not.

n (organizations): 80

Lack of collaboration

Out of the 13 organizations who reported not collaborating regularly with other organizations focused on similar rare diseases or the same genetic mutation, the top reasons cited were differences in organizational strategy and perspectives. Additionally, the absence of adequate staff, resources, and time resulted in a lack of prioritization for such collaborations.

n (organizations): 13

Merging or separation from other organizations

We also wanted to understand the general landscape of rare disease organizations, and whether it was common for them to merge or separate from other organizations. In our data, this seems not to be very common, with most (122) organizations reporting not to have done so.

n (organizations): 130