Dysferlinopathy is a rare disease, so dysferlin-related presentations are infrequent at most conferences, even those focused on muscle diseases. Promoting communal sharing of scientific ideas in the dysferlin community is one of the primary tasks of the Jain Foundation. Consequently, we organize and sponsor our own annual conference in which the agenda focuses solely on dysferlin and dysferlinopathy. We plan every minute of the scientific agenda of the meeting very carefully in order to maximize information exchange within the dysferlin community. Our conference is the only opportunity for dysferlin researchers to gather exclusively to discuss and share data on dysferlin. The dialogue between scientists at our conferences often results in new collaborations that help push the field forward.
One key hurdle to the free flow of information at many conferences is a tendency of participants to present only published data. At the Dysferlin Conference, we address this issue by requiring all attending scientists to present only new and unpublished data. Over the course of the past conferences, trust has been established within the dysferlin community that encourages open sharing of preliminary and unpublished data.
Finally, our conferences involve the participation of 3-4 dysferlinopathy patients every year. Patients are requested to give a brief history of their experience with the disease, including their often long and circuitous diagnostic journey and the progression of their symptoms over time.