Nationale und internationale Patientenorganisationen und Netzwerke

Deutsche Selbsthilfe Angeborene Immundefekte - DSAI e.V.

Allianz Chronischer Seltener Erkrankungen  - Achse e.V.

European Organisation for Rare Diseases

International Patient Organisation for Patients with Primary Immunodeficiencies (IPOPI)

European Society for Immunodeficiencies – ESID

Europäische Datenbank Seltener Krankheiten
www.orpha.net  und www.orphanet.de

Deutsche Gesellschaft für Immunologie

EU-Ebene

EU Kommission,  GD Gesundheit und Verbraucherschutz

EU Health-Portal

EU Rare Diseases Section

Öffentliche Gesundheit :

EU Commission, Health and Consumer Protection Directorate-General, EU initiatives and activities to address rare diseases

Rare Diseases Task Force

EU-funded projects: Links to projects funded by the European Commission to address rare diseases (1999-2003)

Forschung:

Community-funded projects in the field of life sciences, genomics and biotechnology for health and rare diseases

Links to EU projects aimed at developing innovative and effective therapy for rare lung diseases

Orphan Drugs:

Orphan Medicinal Products: Legislative provisions and advances concerning orphan drugs in the EU

Scientific Opinions: European Medicines Agency opinions and evaluations concerning orphan drugs

Scientific Committee on Medicinal Products and Medical Devices: Scientific and technical opinions on EU legislation concerning medicinal products and medical devices (up to 2003)