2013 DEBRA International Congress

 

This was the official website for the 2013 DEBRA International Congress.
DEBRA International congress, held 20-22 September, 2013 in Rome. The venue for the conference was the brand new Auditorium San Paolo of the Bambino Gesù Children's Hospital.
The DEBRA International Congress is an annual event which first took place in Strasbourg, France in 1992.
Content is from the site's 2013 archived pages.

To learn more about the DEBRA International Congress go to their current website at: www.debra-international.org/homepage.html

DEBRA International is a worldwide network of national groups working on behalf of those affected by the genetic skin blistering condition epidermolysis bullosa (EB). 
On our site, you will find information about the condition, appropriate medical care, research into EB and living with EB as well as links to the national DEBRA groups around the world. 
Our vision is to ensure that people living with EB have access to the best quality support and medical care, while also driving the development of effective treatments and cures.

 

 

• Help people with EB

  Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

   

 

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An aside: Our neighbor's daughter has a relatively mild form of EB. When they moved next door and we discovered our daughters were the same age, I read as much information as possible about EB to understand what I should be aware of and help educate my kids. Likewise, my husband who is part of a team that provides support for Salesforce implementation to various businesses and organizations asked his co workers about EB. Turned out that RTS Labs, the progressive software development firm where my husband works has had several clients that were medical practices with patients that were benefiting from the research being done at Columbia University, Stanford University, andd the University of Colorado Anschutz on cell reprogramming of autologous cells as treatment strategies for RDEB using Immune System Programming (ISPTM). I'm always amazed at what a small interconnected world we live in.

My daughter Elsa and Anna became good friends. Right now they are at the age when playing princess is important. The girls looked with me at online stores that sold girls princess costumes and all the accessories that are available to complete the princess look. Because of Anna's sensitivity to certain fabrics, her mother and I decided we would make the girl's princess dresses using as reference the examples found on a website called Everything Princesses. They offered such delightful costumes. We bought wands and other accessories from the site to augment the princess dresses we had made from derma silk and cotton. It's such a delight watching the girls play outside, twirling, giggling, and dancing among the flower garden in their princess dresses. I highly recommend checking out www.debra-international.org/homepage.html. It's a most informative site as is the EB Research Partnership site found at: www.ebresearch.org/institution.html.

 

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Countdown to Congress

WELCOME IN ROME!

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.

 

Family Reduction

• 1st registrant: € 150,00

Registration fee family riduction:

• 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

Congress Venue

Hall / Auditorium San Paolo

Bambino Gesù Children’s Hospital / Ospedale Pediatrico Bambino Gesù   

Via Ferdinando Baldelli, 38   –  Rome

 

FRIDAY, SEPTEMBER 20

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SATURDAY, SEPTEMBER 21

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SUNDAY, SEPTEMBER 22

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