National initiatives or institutions for rare diseases

Belgium
Groupe Pilotage Maladies rares / Stuurgroep Zeldzame Ziekten


Bulgaria
Information Centre for Rare Diseases and Orphan Drugs
Bulgaria National Plan for Rare Diseases 2009-2013

Denmark
The Danish Centre for Rare Diseases and Disabilities

Finland
Väestöliitto - Network of Reference Centres for Rare Diseases
Harvinaiset Sairaus

France
Plan National Maladies Rares (2005-2008)pdf
List of Centres of Reference for rare diseases in France
GIS-Institut des maladies rares
Maladies Rares Info Services - Help line on rare diseases

Germany
Nationales Aktionsbündnis für Menschen mit seltenen Erkrankungen
Bundesministerium für Gesundheit - Seltene Erkrankungen
Seltene Erkrankungen - Nationale Förderung
Research for Rare – Federal Ministry of Education and Research

Hungary
Veleszületett Rendellenességek és ritka betegségek Országos Felügyelete (National Center of Surveillance for Congenital Anomalies and Rare Diseases)

Italy
Centro Nazionale Malattie Rare
Rete Nazionale Malattie Rare

Luxembourg
Groupe de Travail Maladies Rares

The Netherlands
Dutch Steering Committee on Orphan Drugs

Norway
Senter for sjeldne diagnoser (Center for rare diagnoses)
FRAMBU Centre for Rare Disorders

Portugal
Programa Nacional para Doenças Raras / National Plan for Rare Diseasespdf(81 KB)

Spain
Centro de Investigación Biomédica en Red de Enfermedades Raras
National Provincial Atlas of Rare Diseases 1999-2003 (Spain) - 2006pdf(19 MB)
Instituto Carlos III – Instituto de Investigación de Enfermedades Raras
Enfermedades raras en Extremadura 2004 (epidemiological report prepared by the Regional Government of Extremadura)pdf

Sweden
SmågruppsCentrum - Swedish National Centre for Rare Diseases
Rare diseases in Sweden

United Kingdom
National Specialist Commissioning Advisory Group – Department of Health

List of centres of reference in UK by type of centre

United States
National Institutes of Health - Office of Rare Diseases