Events & Media

Useful links

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.

 

The European League Against Rheumatism (EULAR) is the organisation which represents the people with arthritis/rheumatism, health professionals (HPR) and scientific societies of rheumatology of all the European nations. The aims of EULAR are to reduce the burden of rheumatic diseases on the individual and society and to improve the treatment, prevention and rehabilitation of musculoskeletal diseases.

 

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases in Europe and beyond, representing 924 rare disease patient organisations in 72 countries. EURORDIS’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level.

 

The Filière de santé des maladies auto-immunes et auto-inflammatoires systémiques rares (FAI²R) is the French rare diseases Healthcare Network on auto-immune and auto-inflammatory rare diseases, financed and piloted by the French Ministry of Health. FAI²R federates resources and expertise in order to facilitate the care, diagnosis and management of adult and paediatric patients. The main pathologies treated by the network are systemic lupus, scleroderma and other connective diseases.

 

The European Joint Programme on Rare Diseases (EJP RD) brings over 130 institutions (including all 24 ERNs) from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.

 

The Lupus Academy is a long-term initiative committed to improving patient outcomes in Systemic Lupus Erythematosus and allied diseases. By providing a highly interactive educational forum, the Lupus Academy is dedicated to sharing best clinical practice through the dissemination and discussion of cutting edge scientific and clinical research.

 

ePAG Italia is a group of Italian ePAG Advocates that are involved in the ERNs. The group aims at creating a national network of Italian ePAG Advocates and at engaging with the national rare diseases communities in order to contribute to the European and national initiatives on rare diseases and on ERNs.