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 European Commission (DG SANTE) acts as an observer to the Steering Group.


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

Together4RD on Twitter

@eurordis's @yann_eurordis will deliver a keynote speech at the launch event for Together4RD's policy asks. ๐Ÿ‘‰ Thursday 10 November 2022 ๐Ÿ‘‰14:00-16:00 ๐Ÿ‘‰European Parliament, Brussels Secure your place now: Follow @Together4RD for further announcements
28 September at 1:06pm
๐Ÿ—ฃ๏ธ Come join us in the European Parliament on November 10th as we launch our Policy Asks: A new model for collaboration to address areas of unmet need in rare diseases. Don't miss out, register here ๐Ÿ‘‰
16 September at 10:02am
๐Ÿ“ขWe are proud to announce that our first in-person event on the 10th of November will be held under the patronage of the @CZECHIAinEU! ๐Ÿ‡จ๐Ÿ‡ฟ Secure your place๐Ÿ‘‰
05 September at 10:59am