Dear Dr. Frances Hall,
On behalf of the Federation of European Scleroderma Associations, we would like to thank you for participating in our event, Advancing equitable rare disease diagnosis and care: How EU health policy can solve existing challenges, on 27th September at the European Parliament in Brussels, under the patronage of the Croatian Presidency of the Council of EU and the European Parliament, and hosted by MEP Patrizia Toia (IT, S&D).
Above all, we wanted to thank you for your vital contribution to the discussion. As you know, the primary goal of this event was to bring together key stakeholders to discuss the results of the new evidence collected on the gaps and practices in the diagnosis and care of SSc. As well as the opportunities offered by ongoing health-related legislative proposals, such as the European Health Data Space, the review of the Regulation No 141/2000 of the European Parliament and the Council on Orphan Medicinal Products in addressing their root-cause and providing concrete help to the patient community.
FESCA will build on the outcomes of this event, continuing the conversation with European policymakers to make sure systemic sclerosis has the required political attention to advance the policy agenda, in order to benefit the scleroderma community.
We also take this opportunity to let you know that we are currently developing an Event Report, which will be shared with you in the coming weeks. The Report, the pictures and the recording of the event will be published on our website.
Thank you for all the support, which undoubtedly contributed to making this event possible and worthwhile. FESCA hopes to be able to continue collaborating with you in future initiatives!
Best regards,
Sue & Ilaria
Sue Farrington, President & Ilaria Galetti, Vice President
Federation of European Scleroderma Associations (FESCA) Aisbl www.fesca-scleroderma.eu
