miércoles, 16 de julio de 2014

Rare Disease Policy | www.eurordis.org

Rare Disease Policy | www.eurordis.org

Towards comprehensive National Plans and Strategies for Rare Diseases across Europe
EUROPLAN National Conferences foster National Plans for Rare Diseases

Rare Disease Policy

EURORDIS represents the voice of patients and in this capacity plays a central role in the regulatory process. The contribution of EURORDIS has been key to the adoption of important rare disease and orphan medicine legislations at the European level, including the EU Regulation on Orphan Medicinal Products, the EU Regulation on Paediatric Drugs, the EU Regulation on Advanced Therapies, the Commission Communication Rare Diseases: Europe's Challenges, the Council Recommendation on a European action in the field of rare diseases, the EU Directive on Patients’ Rights in Cross-border Healthcare, and others.
By partnering with rare disease national alliances, EURORDIS also contributes to national processes, and facilitates the adoption and implementation of national plans and strategies for rare diseases in European countries.

Overview of National Rare Disease Policies

The Scientific Secretariat of the EUCERD publishes on a yearly basis a comprehensive report on initiatives taken and policies adopted for rare diseases at the national and European level.

Guidance Documents for National Plans

Essential documents for establishing national plans.

EUROPLAN – EURORDIS Tool Kit for National Conferences

Provides necessary information and guidance documents for organising a EUROPLAN National Conference.

The EUROPLAN Project

Started in 2008, this EU project supports national strategies and plans for rare diseases in Member States and other European countries.

EUROPLAN National Conferences 2012-2015

Find out where EUROPLAN National Conferences 2012-2015 are taking place in Europe

Reports of EUROPLAN National Conferences 2012-2015

The EUROPLAN National Conference reports summarise  national discussions around rare disease policy in the context of European guidelines and identify bottlenecks and actions to be taken to improve care and services for patients

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