The Commission Expert Group on Rare Diseases is charged with supporting EU policy on rare diseases. To do so, it may:
– assist the Commission in the drawing up of legal instruments and policy documents;
– advise the Commission in the implementation of Union actions and suggest improvements;
– advise the Commission in the monitoring, evaluation and dissemination of the results;
– advise the Commission on international cooperation;
– provide an overview on Union and national policies;
– foster exchanges of relevant experience, policies and practices between Member States and parties involved.
Consult the Commission Expert Group on Rare Diseases website
NIH ORDR (Office of Rare Diseases Research) is part of the National Center for Advancing Translational Sciences (NCATS). The goals of ORDR are to identify, stimulate, coordinate and support research to respond to the needs of patients who have any one of the approximately 6,800 rare diseases known today.
The goal of the NIH/NCATS GRDR® Program is to integrate de-identified patient data in a standardized manner to facilitate cross disease analyses and interoperability with other databases, to enable data exchange and sharing and to accelerate the development, dissemination and uses of new knowledge, to improve the health and quality of life for millions of people.
Consult the GRDR website
Rare Diseases portal of the European Commission is a section on health in the EU that has been created as a trustworthy gateway to a wide range of information and data on health-related issues and activities at both European, national and international level. The content is produced by the European Commission, the Member States of the EU and the European Economic Area (EEA), plus EU candidate countries; by international organisations; and by pan-European non-governmental organisations in the area of public health.
Consult the Rare Diseases portal of the European Commission
Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.
Consult the Orphanet website