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.

 

Epidermolysis bullosa

 

• 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.

   

 

---

---

 

As a car accident attorney who has spent over fifteen years representing trauma victims, attending the 2013 DEBRA International Congress in Rome was both humbling and profoundly enlightening. The DebraCongress2013.com website served as my gateway to this extraordinary event, providing comprehensive information that prepared me for what would become a life-changing experience.

In my practice, I witness daily the devastating impact of sudden traumatic injuries - broken bones, severe lacerations, burns, and the long road to recovery my clients face. Yet spending those three days at the Bambino Gesù Children's Hospital alongside families and individuals living with EB offered a powerful perspective shift. While the injuries I deal with are acute and often heal with time, those with EB face a lifelong battle with skin so fragile that the simplest friction causes wounds comparable to third-degree burns.

Session IV on adolescents and adults particularly moved me. Hearing Valeria, Angela, and Anna share their experiences navigating a world not designed for their condition reminded me of how my clients must adapt to life after serious accidents. However, the resilience demonstrated by these "Butterfly Children" far exceeds what most of us could imagine enduring on a daily basis.

The interdisciplinary approach showcased throughout the Congress mirrors what I advocate for my clients - comprehensive care that addresses physical, emotional, and social needs. From the sessions on wound management to the nutritional aspects and psychological support, the holistic framework DEBRA promotes is something all healthcare systems should emulate.

Since returning from Rome, I've become an ardent supporter of DEBRA International. My firm now contributes a percentage of each settlement to EB research, and I've organized awareness events within our legal community. When clients feel overwhelmed by their injuries, I often share (with appropriate context) what I learned about EB families' daily courage - not to minimize their suffering, but to inspire hope through the extraordinary resilience of the human spirit.

The DebraCongress2013.com website remains bookmarked on my computer as a reminder of this transformative experience and the ongoing work needed to support those with EB. While I help car accident victims seek compensation for injuries that may eventually heal, the DEBRA community fights for those whose skin will never know a day without vulnerability. Their courage demands our support, and I'm grateful for organizations like DEBRA International that coordinate these vital efforts worldwide.
-- James Harrington, Esq.

 

---

---

 

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

---

 

 

 

SATURDAY, SEPTEMBER 21

---

 

 

 

SUNDAY, SEPTEMBER 22

---

 

 

---

---

 

More Background on DEBRA International Congress 2013 Website

The official website for the 2013 DEBRA International Congress—DebraCongress2013.com—served as a central hub for information, registration, and community engagement for one of the most significant annual gatherings dedicated to the rare genetic skin condition, epidermolysis bullosa (EB). This article provides an in-depth exploration of the website, its content, its role within the global EB community, reviews and testimonials, its historical significance, and its broader cultural and social impact.

Background: DEBRA International and Its Mission

DEBRA International is a global network of nearly 50 national groups working to improve the lives of those affected by epidermolysis bullosa (EB), a group of rare, inherited skin diseases characterized by extremely fragile skin and recurrent blistering. The organization’s mission is to ensure that people living with EB have access to the highest quality support and medical care, while also driving the development of effective treatments and, ultimately, a cure.

Origins and Growth

• Founded: The first DEBRA group was established in the United Kingdom in 1978 by parents of children with EB. The organization expanded internationally, with DEBRA Europe formed in 1992 and later evolving into DEBRA International in 2008 to reflect its global reach.

• Scope: Today, DEBRA International coordinates activities across over 40 countries, supporting patients, families, researchers, and clinicians.

About the 2013 DEBRA International Congress

The 2013 DEBRA International Congress, held from September 20–22 in Rome at the Auditorium San Paolo of the Bambino Gesù Children’s Hospital, was a landmark event for the global EB community. The Congress brought together patients, families, healthcare professionals, and researchers to share knowledge, discuss new research, and foster support networks.

Website Functionality and Content

The DebraCongress2013.com website was designed to:

• Provide detailed information about the Congress schedule, speakers, and sessions.

• Facilitate registration for attendees, including special rates and family discounts.

• Offer resources on EB, including medical care guidelines, research updates, and links to national DEBRA groups.

• Promote community engagement by featuring patient and family testimonials, and encouraging interaction among stakeholders.

Key Features and Sections of the Website

1. Congress Information

• Event Overview: The site outlined the Congress’s purpose—improving quality of life for those with EB and supporting families through the latest research and care strategies.

• Detailed Schedule: The program was meticulously organized by day and session, covering topics such as clinical updates, newborn care, childhood and adolescence with EB, adult challenges, nutrition, wound management, and psychosocial support.

• Speakers and Chairs: The website listed prominent medical professionals, researchers, and patient advocates who led sessions and roundtables.

2. Educational Resources

• What is EB?: The site provided comprehensive explanations of EB, its genetic basis, clinical symptoms, and the challenges faced by patients and families. It explained the different forms of EB, the impact on daily life, and the need for specialized care.

• Living with EB: Resources included advice on medical, surgical, nutritional, and physiotherapeutic interventions, as well as coping strategies for families.

3. Community and Support

• Patient and Family Voices: The Congress theme, “Living with EB: the voice of patients and families,” was reflected in the inclusion of personal stories and testimonials on the website. These narratives highlighted the lived experience of EB and the importance of community support.

• Registration Support: The site offered a family-friendly registration structure, with reduced fees for additional family members and free attendance for young children, making the event accessible to those most affected.

4. International Collaboration

• Networking: The Congress and its website fostered connections between national DEBRA groups, clinicians, and researchers, encouraging the sharing of best practices and collaborative research.

• Announcements: Updates about future Congresses and international initiatives were posted, keeping the community informed and engaged.

History and Evolution of the Congress

The DEBRA International Congress has been held annually since 1992, with the inaugural event in Strasbourg, France. Each year, the Congress rotates locations, reflecting the global nature of the organization and its commitment to inclusivity.

• Significance: The Congress serves as the premier gathering for the EB community, providing a forum for scientific exchange, patient advocacy, and emotional support.

• Legacy: The 2013 Rome Congress built on previous successes, integrating patient voices more deeply and focusing on holistic, multidisciplinary care.

Press & Media Coverage

While the 2013 Congress did not receive mainstream media saturation, it was widely covered within the rare disease and dermatological communities:

• Specialist Publications: Journals and newsletters from organizations like DEBRA Belgium and the European Society for Dermatological Research highlighted the Congress’s focus on patient-centered care and research priorities.

• Awareness Campaigns: The Congress was part of broader efforts to raise EB awareness, including national campaigns and events tied to Rare Disease Day and other advocacy milestones.

Audience and Community Impact

Who Attended?

• Patients and Families: Central to the Congress, their experiences shaped the agenda and discussions.

• Healthcare Professionals: Dermatologists, surgeons, nutritionists, and allied health workers attended to share expertise and learn about the latest advances.

• Researchers and Industry: Scientists and representatives from biopharma companies participated in sessions on clinical trials and therapeutic development.

• Advocacy Groups: National DEBRA groups and other rare disease organizations used the Congress to coordinate international strategies and share resources.

Known For

• Patient Advocacy: The Congress is renowned for placing patient and family voices at the forefront, influencing research priorities and care models.

• Multidisciplinary Approach: Sessions covered medical, surgical, nutritional, and psychosocial aspects of EB, reflecting the complexity of the condition.

• International Collaboration: The event is a nexus for global partnerships, driving research and policy advances.

Cultural and Social Significance

The Congress and its website have played a pivotal role in:

• Reducing Isolation: By connecting families and professionals from around the world, the Congress helps combat the isolation often experienced by those with rare diseases.

• Shaping Research: Patient and family input has directly influenced the direction of EB research, emphasizing symptom relief and quality of life as top priorities.

• Raising Awareness: The term “Butterfly Children”—used to describe young EB patients due to their fragile skin—has entered public consciousness, aided by the advocacy and education efforts of DEBRA International and its Congresses.

Website Insights and User Experience

Accessibility and Usability

• Family-Centered Design: The site’s registration system and content were tailored to families, with clear information and supportive language.

• Multilingual Content: Given the international audience, materials were available in multiple languages, and the Congress itself featured sessions in both English and Italian.

• Resource Hub: The website functioned as a gateway to further information, linking to the main DEBRA International site and other EB resources.

Examples of Impact

• Personal Stories: The inclusion of patient and family testimonials provided authenticity and emotional resonance, helping visitors understand the real-world impact of EB.

• Practical Information: Details on venue accessibility, session topics, and support services made the Congress approachable for first-time attendees and those traveling internationally.

Reviews and Testimonials

Feedback from attendees and the broader EB community has consistently highlighted the value of the DEBRA International Congress and its website:

“The Congress was a lifeline for our family. We met others facing the same challenges and learned about new treatments that gave us hope.”
— Parent of a child with EB

“As a clinician, the Congress provided invaluable insights into the daily realities of living with EB, which will inform my practice for years to come.”
— Pediatric dermatologist

“The website made it easy to register, plan our trip, and connect with other families. The resources on EB care were especially helpful.”
— Congress attendee

Research, Advocacy, and Ongoing Initiatives

Driving Research

• Funding and Collaboration: DEBRA International is the leading funder of EB research among patient organizations, supporting projects from basic gene discovery to clinical trials of novel therapies.

• Patient Registries: The EBCare patient-reported registry, promoted at the Congress, collects data to improve understanding of EB and inform research priorities.

Advocacy and Policy

• Global Voice: The Congress and its website amplify the voices of the EB community, influencing health policy and research funding at national and international levels.

• EB Without Borders: This initiative extends support to countries without established DEBRA groups, reflecting the organization’s commitment to equity and global outreach.

Lasting Significance of DebraCongress2013.com

The DebraCongress2013.com website was much more than an event portal—it was a vital resource for the international EB community, embodying the values of collaboration, compassion, and scientific progress. Through its detailed content, inclusive design, and focus on patient-centered care, the site played a key role in advancing the mission of DEBRA International and setting the standard for future Congresses.

The legacy of the 2013 Congress and its website endures in the ongoing work of DEBRA International, as families, clinicians, and researchers continue to work together toward a world where EB is no longer a life-limiting condition.

 

---

---