About ERN LUNG
Expertise
For patients
Patient registry
ERN-LUNG Academy

The ERN-LUNG Academy is a curriculum for medical staff at any stage of their career, who wishes to get a proof of knowledge on rare respiratory diseases. It consists of Webinars and eCases, but also includes on-site training in ERN-LUNG Centers. We call for applications from participants of EU-member States from September to November each year. Classes start in January. If you wish to apply for next year’s class, please send a letter of motivation to info@ern-lung.eu

ERN-LUNG Online advance system

The EXpert Advisory BOard (EXABO) is a pan-European internet platform, which has been developed in the context of ERN-LUNG in liaison with the Medical Informatics Group of University Hospital Frankfurt, to answer questions on all aspects of rare respiratory diseases. The platform is primarily aimed at patients and care team members but is openly accessible by anyone who wants to ask a related question.

News

LINKS

UMBRELLA SCIENTIFIC ORGANIZATIONS

AECOM Asociación Española para el Estudio de los Errores Congénitos del Metabolismo (Spanish Association for the Study of Congenital Errors of Metabolism)

APS Arbeitsgemeinschaft für pädiatrische Stoffwechselstörungen (Working Group for Pediatric Metabolic Disorders)

ASIEM Australasian Society for Inborn Errors of Metabolism

BIMDG British Inherited Metabolic Diesases Group

Lung Foundation Australia  Rare Lung Disease in Children

GARD Genetic and Rare Diseases Information Center

Lungenärzte im Netz – Seltene Lungenerkrankungen im Fokus (Focus on Rare Lung Diseases)

NORD National Organization for Rare Disorders

NZORD New Zealand Organization for Rare Disorders

ISNS International Society for Neonatal Screening

ECFS European Cystic Fibrosis Society

EURORDIS European Organization for Rare Diseases

ESGCT European Society for Gene and Cell Therapy

UMBRELLA SUPPORT GROUPS AND PATIENT INFORMATION

Disease Info Search Spin-off for information about diseases and related support and advocacy networks

Genetic Alliance Non-profit health advocacy organization devoted to promoting optimum health care for people suffering from genetic disorders

ORPHANET The portal for rare diseases and orphan drugs

RareConnect Connecting rare disease patients globally

SHCA Specialized Healthcare Alliance

Genetic Conditions / rare conditions support groups

European Lung White Book on Rare and Orphan Lung Diseases

CROSS-BORDER HEALTHCARE INFORMATION

Organisation of cross-border healthcare in the EU

Information for patients on their rights to healthcare abroad

Information for patients on National Contact Points

European Cross-Border Cooperation on Health: Theory and Practice

EUROPEAN COMMISSION SITES

ERNs European Reference Networks

CHAFEA Consumers, Health and Food Executive Agency

DG-Santé Health and Food Safety

RESEARCH INFRASTRUCTURES AND DATABASES

Orphanet List of EU Rare Disease Research Infrastructures

US National Library of Medicine

International Statistical Classification of Diseases and Related Health Problems 10th Revision

HGMD Search (Human Gene Mutation Database Cardiff)

DRUGS

EMA European Medicines Agency

FDA Food and Drug Administration

IMI Innovative Medicines Initiative

European Commission – Orphan Medicinal Products

OTHERS

https://www.branchenverzeichnis.org/