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.
Two milestones in EU Rare Disease Policy
The Commission Communication and Council Recommendation have established a strategy for meeting the challenge of rare diseases.
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
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.
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.
The European Conference on Rare Diseases & Orphan Products (ECRD)
The leading conference gathering all rare disease stakeholders in Europe
European Reference Networks
Information on European Reference Networks & the European Patient Advocacy Groups
Patients Access to Diagnosis & Care
EU level initiatives are improving access to rare disease diagnostics and care across Europe.
Patients Access to Treatment
EU level legislation and initiatives encourage the development of rare disease medicines and foster equitable access across Europe.
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....
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.
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.
Patients Access to Information
Key EU-level policies and initiatives foster patient and professional access to information on rare diseases.
EU Rare Disease Policies: An Overview
More than half of Member State legislation stem from EU policies and strategies, including directives, regulations and recommendations.
EU Policy Framework
Key legislative texts, expert committees and funding bodies contribute to the EU rare disease policy framework.
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