miércoles, 13 de noviembre de 2013

Rare Disease Policy | www.eurordis.org

Rare Disease Policy | www.eurordis.org

Towards comprehensive National Plans and Strategies for Rare Diseases across Europe
EUROPLAN conferences in Cyprus, Lithuania, the Netherlands on 14-15 November and in Luxembourg on 19-20 November


Rare Disease Policy

EURORDIS is at the centre of the regulatory process. Our contribution has been key in adopting important rare disease and orphan medicines legislation at the European level, such as the EU Regulation on Orphan Drugs, 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’ Right to Cross-Border Healthcare, and more.
By partnering with national alliances for rare diseases in several countries, we also contribute to national processes, and facilitate the adoption and implementation of national plans or strategies for rare diseases in European countries.
Thanks to the EU Commission Communication and Council Recommendation on an action in the field of rare diseases, national rare diseases policies and plans have gained momentum.

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 for organising a 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 and other useful information about these events.

EURORDIS policy fact sheets for patient advocates

Empowering the voice of patients in policy making at national and EU levels

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