Epidermolysis Bullosa community

Here's a selection of information from patients & professionals to better understand Epidermolysis Bullosa.

Epidermolysis Bullosa resources

Epidermolysis Bullosa Frequently Asked Questions

Here are some of the most frequently asked questions and their answers:

If you are a patient or carer with a question about living with EB, about treatments, or other relevant information please email your question to FAQ@rarediseasecommunities.org and we will put it to the specialists who have agreed to answer your questions from time to time.

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What is EB?

Epidermolysis Bullosa (EB) is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds.

EB is likely to affec...

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Epidermolysis Bullosa Patient Groups

These are patient organisations that have experience and expertise in Epidermolysis Bullosa. They are supporters of this website. Contact them for more information on their activities.

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  • DEBRA International

    The first DEBRA group was founded in the UK by a group of parents whose children were affected by Epidermolysis Bullosa (EB). The original aims of the charity were to stimulate knowledge of, and interest in, EB for the benefit of those with the condition and their families and to fund medical research into EB. From these humble origins DEBRA has grown significantly with DEBRA groups now having been established in about 40 countries around the world. DEBRA International is an umbrella group whose members are the national associations representing people with EB in their countries. All member groups are autonomous, choosing to work together on matters of common interest. Europe, North America and Australasia are well represented amongst the member groups and there is a growing membership in Central and South America, Asia and, to a lesser extent, Africa. Vision 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 for EB. Mission To ensure that anyone living with EB has access to the best quality support, medical care and treatment. To advance research efforts internationally into the care, treatment of and cure for EB. To raise awareness and understanding of EB amongst health professionals and the general public worldwide.

    Contact DEBRA International

  • DEBRA Belgium

    In 1963 werd in Engeland een meisje geboren, Debra Hilton, met een ernstige vorm van EB. Haar moeder stootte op onbegrip in het ziekenhuis en besloot zelf haar baby te verzorgen. DEBRA stierf op 17-jarige leeftijd, in 1980, twee jaar nadat haar moeder DEBRA Engeland had opgericht. Debra was een heel speciaal en moedig meisje, dat droomde van een wereldwijd net van DEBRA-organisaties om EB-patiënten bij elkaar te brengen en geld in te zamelen voor onderzoek. Wij zijn op de goede weg ! DebRA is ook een afkorting die staat voor Dystrophic Epidermolysis Bullosa Research Association. In de loop der jaren ging de Engelse vereniging zich, dankzij steeds grotere inkomsten (uitsluitend giften), meer toeleggen op onderzoek naar de oorzaak van en een behandeling voor EB. De koepels DEBRA EUROPE en DEBRA INTERNATIONAL coördineren de verschillende Europese en internationale DEBRA afdelingen. Wereldwijd worden de researchprojecten rond EB gecoördineerd door een internationaal panel van artsen en wetenschappers.

    Contact DEBRA Belgium

  • DEBRA Croatia

    Vizija Društvo bez predrasuda u kojem je unaprije?ena kvaliteta života oboljelih od rijetkih bolesti. Misija DEBRA, društvo oboljelih od bulozne epidermolize osnovano je s ciljem me?usobnog povezivanja i organiziranja pomo?i i podrške oboljelima od rijetkih bolesti i njihovim obiteljima.

    Contact DEBRA Croatia

  • DEBRA UK

    DEBRA is the national charity working on behalf of people in the UK with the genetic skin blistering condition Epidermolysis Bullosa (EB).

    Contact DEBRA UK

  • DEBRA Austria

    DEBRA Austria ist eine Selbsthilfeorganisation, die sich um die Anliegen der Menschen annimmt, die unter Epidermolysis bullosa (kurz EB) leiden. EB ist eine angeborene, folgenschwere und derzeit noch nicht heilbare Hauterkrankung. EB bewirkt, dass die Haut bei geringster mechanischer Belastung Blasen bildet oder reißt. Wunden und Schmerzen sind die Folge.

    Contact DEBRA Austria

  • EB-Haus Austria

    Das EB-Haus Austria - eröffnet im November 2005 - befindet sich im Areal des Salzburger Universitätsklinikums in enger Anbindung an die Universitätsklinik für Dermatologie. Es ist erste Anlaufstelle für Menschen, die unter der derzeit noch nicht heilbaren, folgenschweren Hauterkrankung Epidermolysis bullosa (kurz: EB) leiden. Mit der Errichtung des EB-Haus Austria hat DEBRA Austria (gegründet 1995 als Selbsthilfegruppe für EB-Betroffene), eines von vielen Zielen erreicht, nämlich kompetente medizinische Versorgung anzubieten und langfristig sicherzustellen. Im EB-Haus Austria wurden darüber hinaus Voraussetzungen geschaffen, um die Chance auf Heilung durch gezielte Forschung zu fördern und die Aus- und Weiterbildung aller mit EB befassten Personen zu gewährleisten.

    Contact EB-Haus Austria

  • DEBRA España

    (Asociación de Epidermolisis Bullosa de España) es una entidad sin ánimo de lucro formada por personas afectadas por EB, profesionales socio-sanitarios y colaboradores. Fundada en 1993, está declarada de UTILIDAD PÚBLICA por el Ministerio del Interior.

    Contact DEBRA España

  • DEBRA Canada

    DEBRA Canada is a voluntary, non-profit organization dedicated to providing support for families affected by Epidermolysis Bullosa (EB) and to heightening Canadians’ awareness of this challenging disease. DEBRA Canada is a registered charity, the only organizational body in Canada exclusively committed to the care and support of families affected by EB and to improving their quality of life. In the coming years, DEBRA Canada hopes to greatly extend its services. New services will range from funding research projects to offering specialist nursing care and other professional services to children and adults with all forms of EB, their families, and caregivers.

    Contact DEBRA Canada

  • Fundación DEBRA México

    La Fundación DEBRA México es una organización voluntaria, sin fines de lucro, dedicada a promover la investigación y la educación sobre la Epidermolisis Bullosa (EB), además de proporcionar servicios y apoyo a las personas con Epidermolisis Bullosa (EB) y a sus familias. La Fundación DEBRA México está asociada con la Dystrophic Epidermolysis Bullosa Research Association UK (DebRA UK), DebRA of America, Inc. de EUA y otras fundaciones semejantes en el resto del mundo. Estamos dedicados a mejorar la calidad de vida de los pacientes con EB y de sus familias.

    Contact Fundación DEBRA México

  • DEBRA Norway

    DEBRA Norge er en nasjonal interesse organisasjon som støtter enkeltpersoner og familier som er berørt av Epidermolysis Bullosa(EB) EB er en sjelden genetisk tilstand som gjør at huden får blemmer ved den minste friksjon, men blemmene kan også oppstå spontant. debra Norge ble stiftet i 1991

    Contact DEBRA Norway

  • DEBRA Italy

    Associazione per la Ricerca sull'Epidermolisi Bollosa NOME: DEBRA Italia Onlus INDIRIZZO: Via Pietro Mascagni, 152 – 00199 Roma Tel/fax: 06 53098688 / mobile 331 6085084 Mail: segreteria@debraitaliaonlus.org DEBRA Italia Onlus – Associazione per la ricerca sull’Epidermolisi Bollosa (EB) nasce nel 1990 su iniziativa di familiari e pazienti determinati ad assicurare ai loro figli una migliore qualità di vita. Per scopo statutario DEBRA Italia Onlus diffonde la conoscenza della patologia e supporta malati e famiglie informandoli sulle più importanti acquisizioni scientifiche e cliniche, fornendo assistenza nell’indirizzare presso i centri clinici accreditati a trattare la patologia. La nostra missione consiste nell’allargare e consolidare le iniziative tese, ieri come oggi, ad agevolare la ricerca medica e a migliorare la qualità della vita delle persone affette da questa patologia. L’EB, internazionalmente conosciuta anche come “Sindrome dei Bambini Farfalla” - a causa dell’estrema fragilità della pelle che ricorda appunto la delicatezza delle ali di una farfalla - è una rara malattia genetica ereditaria, caratterizzata da formazione - tramite frizione, anche la più lieve e a volte persino spontaneamente - di bolle e lesioni della pelle e delle mucose interne, simili a quelle presenti nelle ustioni di II e III grado. DEBRA si occupa di tutte le forme di Epidermolisi Bollosa e lavora a stretto contatto con il Centro di Medicina Rigenerativa di Modena. Con gli anni l’attività di Debra si è notevolmente estesa. Attualmente essa comprende: • Centri di riferimento multispecialistici • Attività congressuale e informazione medico-scientifica • Borse di studio e di ricerca e aggiornamenti medico-scientifici in collaborazione con i principali centri nazionali e internazionali • Attività di sostegno socio-sanitario alle famiglie - rapporti con le istituzioni • Campagne di sensibilizzazione sociale DEBRA Italia Onlus si spende per reperire i fondi necessari alla ricerca e al miglioramento della qualità di vita dei malati EB attraverso: Progetti, Convegni, Supporto, Eventi, Viaggi per malati EB e attraverso i propri volontari – principalmente familiari - con gruppi di auto mutuo aiuto, divulgazione informativa e raccolta fondi attraverso le proprie realtà locali, secondo disponibilità. Fra i più importanti progetti che DEBRA ha contribuito a realizzare: -La prima stanza EB al mondo presso il Bambino Gesù di Roma – (Marzo 2010). -Raccolta fondi per il progetto di ricerca del Prof. De Luca – CMR di Modena (240.000,00 euro solo nel 2009).

    Contact DEBRA Italy

  • DEBRA France

    Cette association a pour but de : * Promouvoir l'assistance et l'entraide entre les personnes atteintes d'une épidermolyse bulleuse. * D’apporter un soutien moral (et financier si besoin) aux personnes atteintes et à leurs familles. * D’informer par tous les moyens disponibles. * De collaborer avec d'autres associations. * De travailler avec le milieu médical dans le cadre de la recherche. * De financer des programmes de recherches sur les épidermolyses bulleuses. * D'obtenir l'intégration des personnes atteintes (milieu scolaire, professionnel etc. ...). * D'obtenir la reconnaissance des spécificités de l'épidermolyse bulleuse par les différents régimes sociaux, les structures privées et publiques.

    Contact DEBRA France

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Epidermolysis Bullosa Documents

Resources, documents and detailed informations on Epidermolysis Bullosa. In this section you can download brochures, ask for printed documents or find useful links.

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Epidermolysis Bullosa Articles

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Orphanet article: Epidermolysis Bullosa (2010)

Inherited epidermolysis bullosa (EB) encompasses a number of disorders characterized by recurrent blister formation as the result of structural fragility within the skin and selected other tissues....

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EPIDERMOLISIS BULLOSA: GENÉTICA Y HERENCIA (ES)

1) INTRODUCCIÓN:
La Epidermolisis Bullosa (EB) es una enfermedad hereditaria y crónica, incurable, cuyo rasgo característico es la formación de ampollas a partir del m...

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Epidermolysis Bullosa Events

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  • May 2012

  • 6th European Conference on Rare Diseases & Orphan Products (ECRD 2012)

    From 23 to 25 May 2012

    MCE Conference Centre in Brussels, Belgium

    More info

  • June 2012

  • European Human Genetics Conference 2012

    From 23 to 26 June 2012

    Its aims are to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe. The Society will encourage and seek to integrate research and its translation into clinical benefits and professional and public education in all areas of human genetics.

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  • November 2012

  • 62nd Annual Meeting of the American Society of Human Genetics (ASHG)

    From 6 to 9 November 2012

    "We have 24 invited slots available and anticipate receiving over 120 proposals. We encourage you to provide as much information as possible in order to assist the Program Committee in their decision making. The ASHG 2012 Program Committee encourages the submission of debate or panel style sessions on thought-provoking or controversial topics."

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Epidermolysis Bullosa community news

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