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The Epirare Survey

The EPIRARE survey intends to explore the functioning, resources, problems, needs and expectations of existing registers in European Member States and in other Countries.

The final aim is to develop tools and services in support of existing registers and to favour the creation of new ones where needed.

The survey is directed to both active and expired RD registers.

Your participation to the survey is of paramount importance as we believe that through joint efforts great advances can be contributed to the rare disease field.

Your participation to this survey will ensure your prompt access to the preliminary results and you will be further consulted on the preparation of support services and tools for RD Registers.

Any specific information on your register or database will be kept confidential.

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