DEBRA Congress 2013

Thursday, 8 December 2016 - ore 10:46

CONGRESS PRESENTATIONS

 

 

DEBRA International Congress 2013
Living with EB: the voice of patients and families

Co-chairs
Claudio Notarantonio, Rainer Riedl

How to improve the quality of life in those who are suffering from Epidermolysis Bullosa? How to help and support them and their families? What are the best treatments (medical and surgical, nutritional, physiotherapical, etc.)?

In the International Congress organized by DEBRA International, patients of all ages (children, adolescents and adults), families, researchers, and health professionals (physicians, surgeons, nutritionists, etc.) respond to these questions by providing complete and updated answers. During the five thematic sessions, that cover all ages (from neonates to adults), both the testimonies of patients and parents as well as the expertise of researchers and medical professionals provide a comprehensive approach and stimulate constructive dialogue. In such a way, for every patient with Epidermolisi Bullosa, DEBRA continues its mission of providing the most updated information, promoting the access to the best health care, and stimulating innovative research.

 

* * *

 

Come migliorare la qualità della vita in chi è affetto da Epidermolisi Bollosa? Come accompagnare e sostenere questi pazienti e le loro famiglie? Quali sono i migliori trattamenti (medico-chirurgici, nutrizionali, fisioterapici, ecc.)?

In questo congresso 2013, organizzato da DEBRA International, pazienti di varie età (bambini, adolescenti e adulti), famiglie, ricercatori e professionisti sanitari (medici, chirurghi, nutrizionisti, ecc.) rispondono a questi interrogativi nel modo più esauriente e aggiornato. Durante le cinque sessioni tematiche (dall’epoca neonatale fino all’età adulta), alle testimonianze di pazienti e genitori si aggiungono i contributi esperti di ricercatori e medici per offrire un approccio integrale e per stimolare un dialogo costruttivo. In tal modo, per ogni paziente affetto da Epidermolisi Bollosa, DEBRA continua la sua missione di assicurare l’informazione più aggiornata, favorire l’accesso alle migliori cure e stimolare ricerca innovativa.

Congress Venue

Hall / Auditorium San Paolo

Bambino Gesù Children’s Hospital / Ospedale Pediatrico Bambino Gesù   

Via Ferdinando Baldelli, 38   –  Rome


Visualizzazione ingrandita della mappa

Our Sponsors

molnlycke  alpretec  polymem

Family Reductions

  • 1st registrant: € 150,00

Registration fee family reductions:

  • 2nd parent, children, brother or sister: € 100,00
  • 3rd+ parents, children, brothers and sisters: € 50,00
  • accompanying persons (grandparents): € 50,00
  • children under 2 years: free
  • children from 2 to 12 years: € 50,00

example:

  1. father: € 150
  2. mother: € 100
  3. 5 years old children: € 50
  4. 1 year old children: free

    TOTAL € 300 (instead of € 600)

Schedule

FRIDAY, SEPTEMBER 20

  • Registration
  • OPENING CERIMONY - Welcoming remarks
  • Session I: EB TODAY
  • Session II: THE NEWBORN AND HIS FAMILY


SATURDAY, SEPTEMBER 21

  • Session III: THE CHILD AND HIS FAMILY
  • Session IV: THE TEENAGER AND THE ADULT
  • ROUND TABLE / HEALTHCARE EQUITY


SUNDAY, SEPTEMBER 22

  • Session V: Conclusions

Accomodation

OLY HOTEL****
Via Santuario Regina degli Apostoli, 36
00145 Rome (www.olyhotel.it)

 

Hotel St. Paul Rome ****
Via Vito Volterra, 43 - 00146 Roma
(www.hotelsaintpaulrome.com/eng/hotel/)

 

HOTEL PULITZER****
Viale Guglielmo Marconi, 905 – 00146 Rome
(www.hotelpulitzer.it)