What is the RD-Connect Community?
The RD-Connect Community is an independent, non-governmental, not-for-profit, international association of individuals and organizations sharing the vision of building an open community that works to improve rare disease research. The Community’s mission is to promote, facilitate and accelerate rare disease research by maximizing the availability and (re)use of rare disease data and biosamples through provision of infrastructure, tools and services to share, analyse and link datasets and biosamples in a secure and regulated way. By promoting data sharing and analysis tools and the data sharing ethos among rare disease researchers and clinicians and by raising awareness among patient communities and policy makers, the community aims to maximise the impact of the tools and services developed by RD-Connect members.
By bringing together experts from diverse backgrounds, including clinicians, academics, geneticists, bioinformaticians, ethicists and patient representatives, the RD-Connect Community combines various approaches to support rare disease research.
History
RD-Connect was established in November 2012 as a 6-year project financed by the European Commission under an FP7 grant. That multidisciplinary consortium developed an integrated platform of tools and resources to improve data analysis, sharing and linkage in rare disease research. In May 2017, the consortium decided to continue its work beyond the end of the FP7 funding period (October 2018) as the RD-Connect Community.
Membership
Benefits of joining RD-Connect
As part of the RD-Connect Community, members can actively participate in shaping the rare disease field, promote data sharing and reuse, advance research and contribute to improving human health. This includes:
- working towards the IRDiRC 2017-2027 Vision of enabling all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention;
- promoting data analysis and sharing in rare disease research through the RD-Connect tools: Genome-Phenome Analysis Platform, Registry & Biobank Finder and Sample Catalogue;
- educating the rare disease field on key issues in the field through international meetings and conferences;
- involving patients and working closely with the patient organizations;
- training and educational activities to teach the rare disease community about data analysis and stewardship;
- developing and promoting ethical, legal and societal guidelines, best practice standards and policies for rare disease data sharing, data stewardship and data analysis.
Members are invited to participate in RD-Connect annual meetings and community events and to work together, share information about research projects, funding opportunities and other opportunities that might support the aims of RD-Connect.
RD-Connect is founded on the principles of collaboration, multidisciplinarity, reciprocity, patient benefit and respect for privacy and autonomy. Members have freedom of scientific enquiry and receive appropriate recognition for their contribution to the field.
Members are entitled to vote on the strategy and direction of the community’s activities. They can also vote on the Community’s Coordinator and well as candidate to become one.
How can members contribute?
Members are encouraged to contribute to the aims and activities of the Community in as many ways as possible. This could include:
- Sharing data and biosamples through the tools and resources developed by RD-Connect
- Acting as an ambassador for the Community and promoting it through networks and events
- Collaborating with other members to improve diagnosis and therapy in rare diseases
- Regularly attending community events and meetings
- Participating in decision-making and priority-setting activities, actively engaging with the Community and voting on leadership and other important issues
- Suggesting and participating in relevant grant opportunities and other funding mechanisms to continue the work of the Community
- Promoting the values of collaboration, multidisciplinarity and reciprocity
Who can become a member?
Membership of RD-Connect is open to organisations, research groups and individuals engaged in rare disease research anywhere in the world. This includes members from diverse backgrounds such as clinicians, academics, bioinformaticians, data scientists, ethicists, patient advocates and others.
To apply for membership, please complete the membership application below. Membership applications will be approved by the Community Executive Committee. By accepting the RD-Connect Constitution, all members of RD-Connect commit themselves to adhering to and promoting the Mission, Vision and Guiding Principles of RD-Connect as defined in the Constitution.
Constitution of the RD-Connect Community
Governance
The RD-Connect Community is governed by the Community Executive Committee (CEC), composed of multidisciplinary members, including at least two patient representatives. The CEC is led by the Chair, Chair Elect and Past Chair, elected by voting every 2 years.
