Report from the RD-Connect Annual Meeting in Athens

On 16-18 April 2018, RD-Connect held its last Annual Meeting in the current EU funding period. The meeting took place in Athens, Greece and was attended by 81 participants, both full and associate RD-Connect partners as well as guests from collaborating institutions.

The meeting was opened by Ivo Gut, the current RD-Connect coordinator, Hanns Lochmüller, the former coordinator and George Patrinos, who was the local host of the event. The agenda included plenary sessions, as well as some parallel sessions, addressing key topics such as future directions, impact, engagement with major stakeholders and sustainability of the RD-Connect infrastructure. The meeting was an opportunity for the project partners to to look back at what has been achieved so far and discuss what needs to be achieved over the next six months. It was agreed that the community developed in RD-Connect is one of the most valuable outcomes and that this will be sustained beyond the current funding period.

At two dedicated sessions, attendees discussed the lessons learned from the six years of patient involvement in RD-Connect and how it can be improved in other projects in the future. The members of the RD-Connect Patient Advisory Council used the meeting as an opportunity to film several patient testimonies that will be later edited and published on the RD-Connect YouTube channel.

The meeting provided partners with lots of opportunities to build on the relationships developed over the last six years while enjoying the stunning location. This included as poster session allowing researchers from all partners to discuss what they have been working on with the rest of the consortium.

The key message from the meeting is that RD-Connect is not ending and there is a desire from everyone involved – researchers, clinicians and patients – to keep working together towards a common goal.

Sustainability and future of RD-Connect

One of the key topics discussed at the Annual Meeting was the future of RD-Connect beyond the initial EU funding period, ending on 31 Oct 2018. At a dedicated session on the first day, the project’s Executive Management Committee looked into the future structure, governance and constitution of RD-Connect. The EMC were delighted to note that it is already clear that the RD-Connect community and the tools and resources will continue without interruption beyond the end of the original funding. Together with key guests from the Scientific Advisory Board, ELIXIR and BBMRI-ERIC, they also discussed ways to sustain both the RD-Connect community and infrastructure. BBMRI-ERIC and ELIXIR showed commitment to supporting the resources developed, the format and terms of this will be finalised in the coming months. The collaboration with the Solve-RD project is providing resources to maintain and develop the Genome-Phenome Analysis Platform, and will greatly increase the amount of data available. RD-Connect joins the rare disease community in awaiting the outcome of the Rare Disease European Joint Programme (RD-EJP) (submitted on the 17th April), which will be a significant step in developing research infrastructure far beyond that which has been developed in RD-Connect.

The future plans also include the continuous work on increasing the impact of RD-Connect on improving the quality of life of patients with rare diseases. During different breakout sessions, attendees explored ways to better interact with major stakeholders: patient communities, industry and the European Reference Networks.