Programme in English

The videos of the presentations are visible clicking on the name of lecturer! The language can be changed by shifting the balance.
The ppt presentations can be found at the bottom of this page.

 

 

     Preliminary programme

        Time:                           Budapest, 26 of February, 2011.

        Location:                    Baroque Palace of the Hungarian Museum of Agriculture

   (Budapest, XIV. Városliget, Vajdahunyadvár)

9:30

Registration

10:00

Ceremonial opening: Jubilate Choir, conducted by Ifj. Sapszon Ferenc.
Welcome: Dr. Réthelyi Miklós, Hungarian Minister of National Resources

10:20

Opening of the Art Exhibition as a result of the Art Contest “Collection of Rare Beauties” organized by HUFERDIS

9:30-17:00

All-day exhibition by and of the NGO-s and informal groups of people with rare diseases. 35 exhibition tables and information points.

Arts and crafts workshop for children, playground for the smallest ones!

 

10:30


Conference: RARE DISEASES & HEALTH INEQUALITES, “RARE BUT EQUAL”

Welcome:  Mr. Stefan Schreck, Head of Unit  "Health Information", European Commission
official language: Hungarian/English, with translation

0:45

10:30 - 17:45 

Family Day,

Entertaining programmes

 

(Performances by famous actors, singers, and by the representatives or the groups of patients it selves; clowns; concerts, games, dance, face painting, lottery, etc.)

 

Section 1: Chairs: Dr. Ségolène Aymé, Dr. Pogány Gábor

10:45 Dr. Ségolène Aymé (Chairperson of EUCERD) – Directions of European Development on the Area of Rare Diseases, (eg. The role of EUCERD).

11:05 Yann Le Cam (CEO Eurordis) – Rare Diseases and Health Inequalities.

11:25 Dr. Domenica Taruscio (EUROPLAN Coordinator, ISS) – The Results of the First  EUROPLAN Programme.

11:45 Dr. Molnár Zsuzsanna (National Centre for Healthcare Audit and Inspection) –The Hungarian Situation of Rare Disease in the Light of Europlan Programme.

12:05 Dr. Aáry-Tamás Lajos (Ombudsman of Educational Rights) Relations of Rare  Diseases and Children with Special Educational Needs (SEN).

12:25

 

Coffee Break / Press Conference

12:25 Award Ceremony of the Art Contest “Collection of Rare Beauties”

13:10 Award Ceremony of Gergely Alexandra Memorial award

13:30

 

Section 2: Chairs: Dr. Horváth Ildikó, Dr. Szőnyi László

13:30 Dr. Sándor János (University of Debrecen) – Start of the Hungarian ORPHANET Registration.

13:50 Dr. Szőnyi László (Semmelweis University) – Hungarian Participation in the EUNENBS (European Union Network of Experts on Newborn Screening) Programme.

14:10 Szy Ildikó (Ministry of National Resources) – Creating Priority Lists in Case of Protocol Development.

14:30 Földvári Anett (University of Debrecen) – The Hungarian Results of EurordisCare2 Survey.

14:50-16:10 University Coordinators of the Expert Committee of Rare Diseases: Organization of Consultation System and Patient Pathways, etc in their Universities.

14:50 Dr. Túri Sándor (University of Szeged) 

15:10 Dr. Melegh Béla (University of Pécs)

15:30 Dr. Pfliegler György (University of Debrecen)

15:50 Dr. Molnár Mária Judit (Semmelweis University)

16:10 Dr. Horváth Ildikó (Ministry of National Resources) – Further Steps toward the Hungarian National Plan on the Area of Rare Diseases.

16:30 Dr. Szabados Márta (National Health Insurance Fund) – The Practice of HTA, Decision Making and Individual Assessment.

16:50 Dr. Laki Ildikó (HAS, Institute of Sociology Kutatóintézet) – Social Inequalities and the Chance of Integration.

17:10 Dr. Farkas Henriette (Semmelweis University) - Realization of the Plan - the Service for HANO Patiens.

 

17:30

Closing Remarks (Dr. Pogány Gábor, President of HUFERDIS)

 

 

 
 
 
 
 
 
 
Comments