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Call for RSE membership update

Dear Friends, As you are aware, RSE recently appointed a new board. We have been busy over the last couple of months reviewing things and thinking about future work etc. We are very keen to hear from our members; what is important to you, how can RSE help you and your families, what sort of […]

EURORDIS Membership Meeting 2017 – Full report

By Danijela Szili. EURORDIS Membership Meeting 2017 This year’s membership meeting took place in Budapest from 19-20 May. It gathered around 300 participants from all over Europe and some from USA, Iran, India, Canada and China. It started with EURORDIS General Assembly for members only. As it is the case every year the Activity Report […]

Eurordis Membership Meeting 2015

By Danijela Szili. Each year, the EURORDIS Membership Meeting provides over 200 patients, patient organisations, policy makers and other stakeholders with networking opportunities and capacity-building workshops to improve the lives of those living with a rare disease. The EURORDIS Membership Meeting workshops are designed to allow patients to develop the knowledge and ability to advance […]

EURORDIS Membership Meeting 2013 and DITA Task Force meeting in Dubrovnik

By Danijela Szili. EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 585 rare disease patient organisations in 54 countries covering over 4000 diseases. Every year EURORDIS organizes its Membership Meeting in a different European city. This is an occasion for patient representatives to gather and learn from each other. The EURORDIS Membership Meeting 2013 […]

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