sábado, 19 de octubre de 2019

Rare Disease Policy | www.eurordis.org

Rare Disease Policy | www.eurordis.org

Eurordis, Rare Diseases Europe



The Voice of Rare Disease
Patients in Europe



Rare 2030 Foresight Study

Rare2030 is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to a better future for people living with a rare disease in Europe.
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Two milestones in EU Rare Disease Policy

The Commission Communication and Council Recommendation have established a strategy for meeting the challenge of rare diseases.
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Major Recommendations shaping RD policy

The EU Committee of Experts on Rare Diseases (EUCERD, 2010-2013) and the European Commission Expert Group on Rare Diseases (CEG-RD, 2013-2016) were established to support EU policy on rare diseases
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EU Joint Actions on Rare Diseases and on Rare Cancers

Involving a broad range of stakeholders across Europe to shape policies, make recommendations aimed at ultimately improving the lives of patients.
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Parliamentary Advocates for Rare Diseases

A network of European and national members of parliament advocating to improve the lives of people living with a rare disease.
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The European Conference on Rare Diseases & Orphan Products (ECRD)

The leading conference gathering all rare disease stakeholders in Europe
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European Reference Networks

Information on European Reference Networks & the European Patient Advocacy Groups
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Patients Access to Diagnosis & Care

EU level initiatives are improving access to rare disease diagnostics and care across Europe.
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Patients Access to Treatment

EU level legislation and initiatives encourage the development of rare disease medicines and foster equitable access across Europe.
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Breaking the Access Deadlock to Leave No One Behind

A contribution by EURORDIS and its members on possibilities for patients' full and equitable access to rare disease therapies in Europe This position paper is a contribution from EURORDIS and its members that offers a synthesis of their analysis, reflections and perspectives on the issue of access to rare disease therapies....
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The EURORDIS Access Campaign

The EURORDIS Access Campaign pushes for improved access to, and the development of rare disease medicines, diagnostic tests and medical devices.
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Social policy & integrated care

EURORDIS promotes the integration of rare diseases into social policies and also integrated care for rare disease patients and their carers.
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Patients Access to Information

Key EU-level policies and initiatives foster patient and professional access to information on rare diseases.
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EU Rare Disease Policies: An Overview

More than half of Member State legislation stem from EU policies and strategies, including directives, regulations and recommendations. 
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EU Policy Framework

Key legislative texts, expert committees and funding bodies contribute to the EU rare disease policy framework.
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