From genetics, through international research, to national treatment guidelines and public health services in hereditary angioedema. Quo vadis Romania? Workshop - Tîrgu Mureş, Romania 2012

The workshop brought togheter hereditary angioedema (HAE) experts from Europe, Israel and South Africa, profesionals and residents from various specialties, doctoral student and medical students from Tîrgu Mureş and other Romanian medical Universities. The goal of the workshop was to diseminate up to date research knowledge in molecular genetics, pharmaceutics and health service management and organisation in the field of HAE. In order to expand the interdisciplinary cooperation, we have invited speakers from the Romanian Ministry of Health, from the National Aliance for Rare Diseases, SMURD (Mobile Emergency Service for Resuscitation and Extrication), specialists in genetics and laboratory medicine. Based on the keyspekers experience, we edited a National Guideline for Diagnostic and Treatment of HAE, as a preparatory step before the aproval of a National Program intended to reach the orphan patients of the Romanian health care system. Click here to see the image gallery.

Organisers

University of Medicine and Pharmacy, Tîrgu-Mureş
Romanian Hereditary Angioedema Network

 

Organizing Commitee

Dumitru Moldovan - Tîrgu Mureş, Romania
Henriette Farkas - Budapest, Hungary
Peter Spaeth - Bern, Switzerland

 

Secretaries

Enikő Mihály
Noémi Anna Bara
Alina Bogdănescu

 

Dates and Venues of the Workshop

August 30th - Plazza Hotel, Concordia Hotel’s Restaurant
August 31st – September 1st - Business Center

 

Sponsors

UEFISCDI - Ministry of Education and Research. Project code: EN- II – ID-WE-2012-4-070
CSL Behring
Swedish Orhphan Biovitrum
ViroPharma

 

Final Program

Thursday August 30th, 2012

12.00-18.00 Participants' registration (Plazza Hotel)

19.00 – 22.00 Welcome cocktail (Concordia Hotel's Restaurant)
 
 
Friday August 31st, 2012 (Business Center, Conference hall)

9.00 - 13.00

Chairs
Dumitru Moldovan, Tîrgu Mureș, Romania
Henrik Boysen, Hasselager, Denmark

Welcome from the organizers (10 minutes)

Anastasios Germenis - Larissa, Greece. An up-grade of Greek-Romanian-German-Cypriote cooperation on molecular genetics of hereditary angioedema (HAE) (20 minutes)

Lilian Varga - Budapest, Hungary. Cost effective routine laboratory methods for diagnosis of C1-INH deficiency related HAE (20 minutes)

Peter Spaeth - Bern, Switzerland. Bradykinin-mediated hereditary angioedema – Available drugs and their site of intervention (20 minutes)

Konrad Bork - Mainz, Germany. Short- and long-term treatment of HAE attacks (40 minutes)

Cofee break - 20 minutes

Henriette Farkas - Budapest, Hungary. The HAE management of women and children in Hungary (30 minutes)

Avner Reshef - Tel-Hashomer, Israel. Guidelines and cost efficiency principles in treating HAE patients in Israel (25 minutes)

Bernd Rosenkranz - Cape Town, South Africa. HAE: the situation in South Africa (20 minutes)

Discussions – Five minutes after each presentation

 

12.40 - 14.30 – Lunch

 

14.30 - 17.00 (Business Center, Conference hall)

Chairs
Henriette Farkas, Budapest, Hungary
Peter Spaeth, Bern, Switzerland

Henrik Boysen - Hasselager, Denmark. Heterogeneity of diagnosing and treating HAE in the world. The perception by HAE-International (25 minutes)

Henriette Farkas - Budapest, Hungary. Principles of reimbursement and control of HAE drugs in Hungary (20 minutes)

Maria Puiu, Emese Darkó - Timisoara and Zalău, Romania. Progress in the reference centers authorization in Romania (20 minutes)

Dumitru Moldovan, Eniko Mihály, Noémi-Anna Bara, Valentin Nădăşan - Tîrgu-Mureș, Romania. Seven-year experience as a pilot center in HAE in Romania (20 minutes)  

Dorica Dan, Emese Darkó - Zalău, Romania. EUCERD recommendation on quality criteria for centers of expertise in rare diseases in member states (15 minutes)

Mihaela Bardoş - Office of the Romanian Ministry of Health. Rare diseases in the national health system. Chalenges and perspectives  (20 minutes)

Discussions – Five minutes after each presentation

 

19:00– 23.00 Supper ("Laci Csárda" Restaurant)

 

Saturday, September 1st, 2012 (Business Center, Conference hall)

9.00 - 12.00

Dumitru Moldovan - Tîrgu-Mureș, Romania. Applied pharmaco-economics principles: Romanian guidelines for the management of HAE (draft)

All - Panell discussion among experts concerning the National HAE Diagnosis and Treatment Guidelines

Dumitru Moldovan - Concluding remarks

 

12.00 - Lunch

 

First published: 07.27.2012
Last update: 10.19.2012