Rare Disease Community Co-Lead

In this role, you will contribute to the leadership and direction of the Rare Disease Community. This includes developing the Rare Disease Community strategy, identifying work that can be taken forward by the group, chairing calls, leading and listening to the community as it works through technical issues, building consensus, and liaising with stakeholders within GA4GH and externally.

About the team

The Global Alliance for Genomics and Health (GA4GH) (https://www.ga4gh.org) is a global volunteer standards development organisation dedicated to realising the potential of genomics in health. Supported by Secretariat staff across five host institutions (Ontario Institute for Cancer Research, Broad Institute of MIT and Harvard, Wellcome Sanger Institute, EMBL’s European Bioinformatics Institute, and McGill’s Victor Phillip Dahdaleh Institute of Genomic Medicine) members of the volunteer community provide expert leadership to GA4GH’s Work Streams and Communities of Interest.

Communities of Interest focus on exploring use cases, challenges, and success related to real world GA4GH standard implementation within specific domains (e.g. Rare Disease, Cancer, Infectious Disease). Shared goals of these communities include strengthening the communication and interaction between users and developers to support the creation of fit-for-purpose solutions, increasing the chances of collaboration favouring interoperability and data sharing, and connecting international initiatives with common needs through interoperability standards. 

We would like to invite expressions of interest in the volunteer role of Rare Disease Community Co-Lead.

Your role

This is an opportunity to be at the heart of shaping the direction of the newly launched Rare Disease (RD) Community. Working closely with your Co-Leads and members of the GA4GH Secretariat, the Rare Disease Community Co-Lead will contribute to the leadership and direction of the RD community’s efforts, in line with GA4GH’s wider direction and goals, as set at an organisational level. This involves developing RD Community strategy, identifying and triaging work to Work Streams and cross-Work-Stream groups, recognising opportunities for study group development, chairing calls, working through technical issues as a group, listening to community members, and building consensus. As the RD Community will involve discussion of standards and work with multiple groups from across GA4GH, considerable liaison skills will be required along with the ability to work with different teams on product development.

You have

• substantial experience in rare disease research and any of the following areas: biomedical informatics, genomics, computational development, or related disciplines;
• an ability to work effectively with and provide leadership to a broad range of people from multiple disciplines and cultures;
• the ability to engage with others, explore multiple points of view and build consensus;
• the capacity to identify opportunities aligned with the group’s goals and translate these into actionable plans;
• the ability to translate scientific or organisational needs expressed, for example, in implementation groups, and translate into action;
• a demonstrable ability to work collaboratively;
• an understanding of the complexity of integration across projects and standards in genomics with previous experience in this area and a deep understanding of the need for standards to work internationally.

You might also have

• experience working with GA4GH or other standards development organisations;
• experience working as part of a volunteer community;
• experience authoring or consuming APIs for bioinformatics;
• experience working with a custodian of genomic data;
• experience working on or with a project for sharing genomic data between organisations.

Why join us

GA4GH is committed to developing the standards necessary to enable the potential benefits of genomics in health to be made a reality and to supporting the global data sharing and interoperability that this requires. With a global volunteer community made up of hundreds of individuals from a variety of organisations and institutions, GA4GH provides an active environment in which to drive these aims forward while building on our foundational commitments to human rights, ethics, and security.

Having a truly globa lcommunity of contributors and leadership is key to GA4GH’s work. We are committed to providing an inclusive and welcoming environment for contributors at all levels in GA4GH and welcome nominations from all interested individuals.