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Membership of EURORDIS

EURORDIS works to build a strong pan-European community of patient organisations and people living with rare diseases. Download the list of EURORDIS Member Associations. EURORDIS' members around ... EURORDIS.org at a glance.

How to become a member of EURORDIS

19 Aug 2009 ... 50% of funding from several companies); Holding non-profit status ... with the necessary supporting documents, to [email protected].

rare disease patient registries - Eurordis

status to a major priority for all stakeholders, making them a building block of any sound policy ... Patient Registries · http://download.eurordis.org/documents/pdf/ ...

The Voice of Rare Disease Patients in Europe - EURORDIS

26 Mar 2020 ... We know that no policy maker or public health authority wishes to leave ... as well as their socio-economic status, education and employment.

Register to join Rare Barometer Voices - Eurordis

Rare Barometer Voices is a EURORDIS initiative that aims to make the voice of rare ... it is used to create a collective analysis and your personal information will not be ... You can download an email template to encourage your members and their ... Sandra Courbier, Rare Barometer leader: [email protected].

EURORDIS - The Voice of Rare Disease Patients in Europe

EURORDIS - Rare Diseases Europe, is a non-governmental patient-driven alliance of ... No time to lose: Building a data strategy for the European Reference Networks ... RareConnect.org, together with the world's leading rare disease patient ...

Rare Diseases: Understanding this Public Health Priority - Eurordis

1 Nov 2005 ... Tel 33 1 56 53 52 10 – Fax 33 1 56 53 52 15 – www.eurordis.org ... many registries do not publish sufficient data that break down figures of ...

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