Structure and Funding Partners

Steering Group

The Steering Group provides strategic input to, and oversight of, all work undertaken in Together for Rare Diseases. It provides input to the annual workplan, and advises on ways of working, meeting formats, key participants and development of outputs.

Members meet bi-monthly, and comprise representatives from within ERNs, a patient group, international research initiatives and industry.


The Secretariat, provided by FIPRA Public Affairs, is aided by the funding partners.

It supports the Steering Group in the preparation of the meetings and delivery of the outputs, ensures communication with the wider community, and facilitates the good delivery of the work plan. It handles day-to-day operations of the initiative.

Funding Partners

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01 January at 12:00am