The aims
To promote knowledge and international multidisciplinary collaboration among experts in the field of systemic autoinflammatory disorders (AID). The AID working party brings together clinicians, scientists and geneticists in order to improve understanding, care and outcome of patients with AID.
The composition:
Chair: MD Véronique Hentgen, French reference center for autoinflammatory diseases and secondary amyloidosis (CEREMAIA), Versailles Hospital, France.
Secretary: Federici Silvia
Some further persons are involved in the AID working party and are particularly concerned with
- Clinical affairs: Antonella Insalaco
- Educational affairs: Roberta Caorsi
- Research affairs: Jürgen Brünner
The activities:
The WP arranges a meeting annually at the Paediatric Rheumatology Congress; interested members are invited by e-mail.
Ongoing projects on educational affairs
- JIR winter school on autoinflammatory diseases
http://www.fondationres.org/fr/jir-winter-school-switzerland - Novel technologies for education (on-line tools)
- Clinical cases by email from the PReS
- Link to existing educational programs
Ongoing projects on clinical affairs
Guidelines and standard of treatment / recommendations for a rational use of biologic agents in AIDs
- Survey of existing recommendations in different countries
- Provide the existing recommendations on an European level.
- PReS endorsement of already existing recommendations (English) with translations to other European languages.
Ongoing projects on research affairs
- Activity score for AID (lead : Gaslini institute, Italy)
- Severity score and quality of life for AID (lead : CEREMAIA, France)
Contacts
- Chair: Véronique Hentgen vhentgen@ch-versailles.fr
- Secretary: Federici Silvia silvia.federici@opbg.net
- Clinical affairs: Antonella Insalaco antonella.insalaco@opbg.net
- Educational affairs: Roberta Caorsi robertacaorsi@hotmail.it
- Research affairs: Jürgen BRUNNER juergen.brunner@tirol-kliniken.at
