| Dystrophic nail care - Foot care |
Debra International |
Debra International |
Pdf Guidance |
English |
https://www.debra-international.org/foot-care-in-eb |
| Hyperkeratosis (callus) care for adults living with EB - Foot care |
Debra International |
Debra International |
Pdf Guidance |
English |
https://www.debra-international.org/foot-care-in-eb |
| Footwear advice for parents caring for a child living with EB - Foot care |
Debra International |
Debra International |
Pdf Guidance |
English, Dutch |
https://www.debra-international.org/foot-care-in-eb |
| Footwear advice for adults living with EB - Foot care |
Debra International |
Debra International |
Pdf Guidance |
English, Dutch |
https://www.debra-international.org/foot-care-in-eb |
| Laboratory diagnosis |
Debra International |
Debra International |
Pdf Guidance |
English, Spanish, French, Dutch |
https://www.debra-international.org/laboratory-diagnosis-in-eb |
| Improving particiaption in daily activities for children living with EB - Occupational Therapy |
Debra International |
Debra International |
Pdf Guidance |
English |
https://www.debra-international.org/occupational-therapy-in-eb |
| Improving particiaption in daily activities for adults living with EB - Occupational Therapy |
Debra International |
Debra International |
Pdf Guidance |
English |
https://www.debra-international.org/occupational-therapy-in-eb |
| Support for parents caring for a child living with EB - Psychosocial care |
Debra International |
Debra International |
Pdf Guidance |
English, Dutch |
https://www.debra-international.org/psychosocial-care-in-eb |
| for adults living with EB - Psychosocial care |
Debra International |
Debra International |
Pdf Guidance |
English, Dutch, Portuguese |
https://www.debra-international.org/psychosocial-care-in-eb |
| Support from your EB team / Healthcare providers - Psychosocial care |
Debra International |
Debra International |
Pdf Guidance |
English, Dutch |
https://www.debra-international.org/psychosocial-care-in-eb |
| Guidance for adults with EB and their carers |
Debra International |
Debra International |
Pdf Guidance |
English, Dutch, French, Portuguese, Swedish |
https://www.debra-international.org/skin-and-wound-care-in-eb |
| Healthy Body and skin |
Debra International |
Debra International |
Pdf Guidance |
English, Portuguese, Spanish, French, Bahasa indonesia, Chinese, Arab, Turkish, Hindi, Urdu |
https://www.debra-international.org/skin-and-wound-care-in-eb |
| Pain Management Meditation for pain relief |
Wellmind health |
Wellmind health |
Video |
English |
https://www.meditainment.com/pain-management-meditation |
| How To: Care for Wounds |
Debra of America |
Debra of America |
Pdf Guidance |
English |
https://www.debra.org/how/care-wounds |
| How To: Care for Blisters |
Debra of America |
Debra of America |
Pdf Guidance |
English |
https://www.debra.org/how/care-blisters |
| How To: Care for Newborns |
Debra of America |
Debra of America |
Pdf Guidance |
English |
https://www.debra.org/how/care-newborns |
| How To: Choose Products |
Debra of America |
Debra of America |
Pdf Guidance |
English |
https://www.debra.org/how/choose-products |
| How To: Prepare a Bath |
Debra of America |
Debra of America |
Pdf Guidance |
English |
https://www.debra.org/how/prepare-bath |
| How To: Recognize Infection |
Debra of America |
Debra of America |
Pdf Guidance |
English |
https://www.debra.org/how/recognize-infection |
| EB Care Tips |
Debra of America |
Debra of America |
Pdf Guidance |
English, Espanol |
https://www.debra.org/how/eb-care-tips |
| Management of children with Epidermolysis Bullosa: Therapeutic education for parents and carers |
Ospedale Pediatrico Bambino |
ERN-Skin |
Pdf Guidance |
English, Italian |
https://img.ospedalebambinogesu.it/images/2022/02/22/103317894-1f11ef99-0cfb-49b6-9588-f2662752c101.pdf |
| Emergency management in epidermolysis bullosa: consensus clinical recommendations from the European reference network for rare skin diseases |
Orphanet Journal of Rare Diseases |
ERN-Skin |
Pdf paper |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Emergency-management-in-EB.pdf |
| Clinical practice guidelines for laboratory diagnosis of epidermolysis bullo |
British Journal of Dermatology |
ERN - Skin |
Pdf paper |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Laboratory-diagnosis-EB-.pdf |
| Psychosocial Guidance for social and healthcare professionals/ epidermolysis bullosa (EB) teams |
Debra International |
Debra International |
Pdf Guidance |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Psychosocial-guidance-EB-compressed.pdf |
| Occupational therapy for epidermolysis bullosa: clinical practice guidelines |
Orphanet Journal of Rare Diseases |
ERN - Skin |
Pdf paper |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Occupational-therapy-for-EB.pdf |
| Preventative nutritional care guideline |
Debra international |
Debra International |
Pdf Guidance |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Constipation-management-EB-.pdf |
| Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guidelines |
Orphanet Journal of Rare Diseases |
ERN-Skin |
Pdf paper |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Psychosocial-care-EB.pdf |
| Foot care in epidermolysis bullosa: evidence-based guideline |
British Journal of Dermatology |
ERN-Skin |
Pdf paper |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Foot-care-EB.pdf |
| Skin and wound care in epidermolysis bullosa |
Debra Uk - Wounds Int. |
ERN-Skin |
Pdf guidance |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Skin-and-wound-care-EB.pdf |
| Management of cutaneous squamous cell carcinoma in patients with epidermolysis bullosa: best clinical practice guidelines |
British Journal of Dermatology |
ERN-Skin |
Pdf paper |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Cancer-management-EB.pdf |
| Pain care for patients with epidermolysis bullosa: best care practice guidelines |
BMC Medicine |
ERN-Skin |
Pdf paper |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Pain-management-EB.pdf |
| Multicentre consensus recommendations for skin care in inherited epidermolysis bullosa |
Orphanet Journal of Rare Diseases |
ERN-Skin |
Pdf paper |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Multicentre-consensus-recommendations-EB.pdf |
| Oral Health Care for Patients with Epidermolysis Bullosa – Best Clinical Practice Guidelines |
International Journal of paediatric Dentistry |
ERN-Skin |
Pdf paper |
English |
https://ern-skin.eu/wp-content/uploads/2020/08/Oral-healthcare-EB.pdf |
| Emergency cards for EB patients |
ERN-Skin |
ERN-Skin |
Website page |
Enlgish, German, French, Dutch, Czech, Italian |
https://ern-skin.eu/emergency-cards/ |
| Hand mobility exercises for children suffering from epidermolysis bullosa |
FIMARAD |
FIMARAD |
Video tutorials |
French (with English subtitles) |
https://ern-skin.eu/tutorials/ |
| Training on specific hand care for patients with epidermolysis bullosa |
FIMARAD |
FIMARAD |
Video tutorials |
French (with English subtitles) |
https://ern-skin.eu/tutorials/ |
| Epidermolysis bullosa and breastfeeding |
OPBG |
OPBG |
Video tutorials |
English |
https://ern-skin.eu/tutorials/ |
| Epidermolysis bullosa and oral hygiene |
OPBG |
OPBG |
Video tutorials |
English |
https://ern-skin.eu/tutorials/ |
| Management of children with Epidermolysis Bullosa: Therapeutic education for parents and carers |
OPBG |
OPBG |
Pdf Guidance |
English and Italian |
https://ern-skin.eu/reference-center/guidelines-eb/ |
| Epidermolisi bollosa e allattamento al seno (Epidermolysis bullosa and breastfeeding) |
OPBG |
OPBG |
Youtube video |
Italian |
https://www.youtube.com/watch?v=jEZu4eCLdmE |
| Epidermolisi bollosa e igiene orale (Epidermolysis bullosa and oral hygiene) |
OPBG |
OPBG |
Youtube video |
Italian |
https://www.youtube.com/watch?v=w_fXzYnvNCg&feature=youtu.be |
| (Epidermolysis bullosa) |
(Rare Disease Institute) |
(Rare Disease Institute) |
Website article |
Bulgarian |
https://www.raredis.org/archives/1045?lang=bg |
| Description for clinicians |
National Centre for Public Health |
National Centre for Public Health |
Pdf Guidance |
Bulgarian |
https://ncpha.government.bg/uploads/rd/Q81_BuloznaEpidermoliza.pdf |
| Consensus Guideline |
Bulgarian Dermatology Society |
Bulgarian Dermatology Society |
Zip file: 14 pdfs |
Bulgarian |
https://www.bg-derm.org/?page_id=1940 |
| Was ist Epidermolysis bullosa, EB? (What is Epidermolysis bullosa, EB?) |
Debra Germany |
Debra Germany |
Youtube video |
German |
https://www.ieb-debra.de/schmetterlingskrankheit-epidermolysis-bullosa/ |
| Praktische Hinweise bei Epidermolysis bullosa, EB (Practical advice for epidermolysis bullosa, EB) |
Debra Germany |
Debra Germany |
Web page |
German |
https://www.ieb-debra.de/praktische-hinweise/#neugeborene |
| Ernährung bei EpidermolysisBullosa, EB (Nutrition in EpidermolysisBullosa, EB) |
Debra Germany |
Debra Germany |
Web page |
German |
https://www.ieb-debra.de/ernaehrung-bei-epidermolysis-bullosa-eb/ |
| Blutarmut und Nährstoffmangel bei Epidermolysis bullosa, EB (Anemia and nutrient deficiency in epidermolysis bullosa, EB) |
Debra Germany |
Debra Germany |
Web page |
German |
https://www.ieb-debra.de/blutarmut-und-naehrstoffmangel-bei-epidermolysis-bullosa-eb/ |
| Angemessene Versorgung bei Epidermolysis bullosa, EB (Appropriate care for epidermolysis bullosa, EB) |
Debra Germany |
Debra Germany |
Web page |
German |
https://www.ieb-debra.de/angemessene_versorgung_bei_epidermolysis_bullosa/ |
| Hilfe für ukrainische Geflüchtete mit EB (Help for Ukrainian refugees with EB) |
Debra Germany |
Debra Germany |
Web page |
German |
https://www.ieb-debra.de/hilfe-fuer-ukrainische-gefluechtete-mit-eb/ |
| Lilly, die Pferdeflüsterin (Wundversorgung bei Epidermolysis bullosa) - deutsche Version [Lilly, the horse whisperer (wound care for epidermolysis bullosa) - German version)] |
Debra Germany |
Debra Germany |
Youtube video |
German |
https://www.youtube.com/watch?v=DYjUyrFwF3o |
| Leben mit Epidermolysis bullosa (Living with epidermolysis bullosa) |
Debra Germany |
Debra Germany |
Youtube video |
German |
https://www.youtube.com/watch?v=0Aba3IzNEZw |
| Diagnostik der epidermolysis bullosa (Diagnosis of epidermolysis bullosa) |
Universitätsklinikum Freiburg (UKF) |
Universitätsklinikum Freiburg (UKF) |
Web page |
German |
https://www.uniklinik-freiburg.de/hautklinik/kompetenzzentrum-fuer-fragile-haut-und-epidermolysis-bullosa/epidermolysis-bullosa-zentrum/diagnostik.html |
| Ernährung bei dystropher und junktionaler Epidermolysis bullosa, EB (Nutrition in dystrophic and junctional epidermolysis bullosa, EB) |
Universitätsklinikum Freiburg (UKF) |
Universitätsklinikum Freiburg (UKF) |
Web page |
German |
https://www.uniklinik-freiburg.de/hautklinik/kompetenzzentrum-fuer-fragile-haut-und-epidermolysis-bullosa/epidermolysis-bullosa-zentrum/handling-von-neugeborenen-und-saeuglingen-1.html |
| Vermeidung von Blasen und Schutz der Haut (Prevention of blisters and protection of the skin) |
Universitätsklinikum Freiburg (UKF) |
Universitätsklinikum Freiburg (UKF) |
Web page |
German |
https://www.uniklinik-freiburg.de/hautklinik/kompetenzzentrum-fuer-fragile-haut-und-epidermolysis-bullosa/epidermolysis-bullosa-zentrum/therapie/schutzvorkehrungen.html |
| Wenn Blasen aufgetreten sind (When bubbles appear) |
Universitätsklinikum Freiburg (UKF) |
Universitätsklinikum Freiburg (UKF) |
Web page |
German |
https://www.uniklinik-freiburg.de/hautklinik/kompetenzzentrum-fuer-fragile-haut-und-epidermolysis-bullosa/epidermolysis-bullosa-zentrum/therapie/symptomatische-therapie.html |
| Verbandswechsel (Dressing change) |
Universitätsklinikum Freiburg (UKF) |
Universitätsklinikum Freiburg (UKF) |
Web page |
German |
https://www.uniklinik-freiburg.de/hautklinik/kompetenzzentrum-fuer-fragile-haut-und-epidermolysis-bullosa/epidermolysis-bullosa-zentrum/therapie/verbandswechsel.html |
| Wundpflege-Materialien (Wound Care Materials) |
Universitätsklinikum Freiburg (UKF) |
Universitätsklinikum Freiburg (UKF) |
Web page |
German |
https://www.uniklinik-freiburg.de/hautklinik/kompetenzzentrum-fuer-fragile-haut-und-epidermolysis-bullosa/epidermolysis-bullosa-zentrum/therapie/wundpflege-und-versorgung.html |
| Pathogenese und Klassifikation der Epidermolysis bullosa (Pathogenesis and classification of epidermolysis bullosa) |
Universitätsklinikum Freiburg (UKF) |
Universitätsklinikum Freiburg (UKF) |
Web page |
German |
https://www.uniklinik-freiburg.de/hautklinik/kompetenzzentrum-fuer-fragile-haut-und-epidermolysis-bullosa/epidermolysis-bullosa-zentrum/pathogenese-klassifikation.html |
| Hautkrebs bei dystropher epidermolysis bullosa (Skin cancer in dystrophic epidermolysis bullosa) |
Universitätsklinikum Freiburg (UKF) |
Universitätsklinikum Freiburg (UKF) |
Web page |
German |
https://www.uniklinik-freiburg.de/hautklinik/kompetenzzentrum-fuer-fragile-haut-und-epidermolysis-bullosa/epidermolysis-bullosa-zentrum/hautkrebs-bei-dystropher-epidermolysis-bullosa-eb.html |
| Handling von Neugeborenen und Säuglingen mit Verdacht auf Epidermolysis bullosa, EB (Handling of newborns and infants with suspected epidermolysis bullosa, EB) |
Universitätsklinikum Freiburg (UKF) |
Universitätsklinikum Freiburg (UKF) |
Web page |
German |
https://www.uniklinik-freiburg.de/hautklinik/kompetenzzentrum-fuer-fragile-haut-und-epidermolysis-bullosa/epidermolysis-bullosa-zentrum/handling-von-neugeborenen-und-saeuglingen.html |
| What is EB? Booklet |
Debra International |
Debra International |
Booklet |
English, Portuguese, Dutch, Espanol, French |
Evidence research and expert opinion |
https://www.debra-international.org/eb-information-and-resources |
| What is EB? Poster |
Debra International |
Debra International |
Poster |
English, Portuguese, Dutch, Espanol, French |
https://www.debra-international.org/eb-information-and-resources |
| What is EB? Newborn with EB |
Debra International |
Debra International |
Leaflet |
English, Portuguese, Dutch, Espanol, French |
https://www.debra-international.org/eb-information-and-resources |
| EB card |
Debra International |
Debra International |
Pdf |
English |
https://www.debra-international.org/eb-card |
| Emergency care information in EB |
Debra International |
Debra International |
Pdf Guidance |
English |
https://www.debra-international.org/eb-emergency-care-information |
| Management of cutaneous squamous cell carcinoma in patients with epidermolysis bullosa: best clinical practice guidelines |
British Journal of Dermatology |
Debra International |
Pdf paper |
English |
https://www.debra-international.org/cancer-management-in-eb-cpg |
| Preventative nutritional care guideline constipation management for children and adults with epidermolysis bullosa (EB) |
Debra International |
Debra International |
Pdf guidance |
English |
https://www.debra-international.org/constipation-management-in-eb-cpg |
| Foot care in epidermolysis bullosa: evidence-based guideline |
British Journal of Dermatology |
Debra International |
Pdf paper |
English |
https://www.debra-international.org/foot-care-in-eb-cpg |
| Hand surgery and hand therapy clinical practice guideline for epidermolysis bullosa |
Orphanet Journal of Rare Diseases |
Debra International |
Pdf paper |
English |
https://www.debra-international.org/hand-surgery-hand-therapy-cpg |
| Clinical practice Guidelines for laboratory diagnosis in epidermolysis bullosa |
British Journal of Dermatology |
Debra International |
Pdf paper |
English |
https://www.debra-international.org/laboratory-diagnosis-in-eb-cpg |
| Occupational therapy for epidermolysis bullosa: clinical practice guidelines |
Orphanet Journal of Rare Diseases |
Debra International |
Pdf paper |
English |
https://www.debra-international.org/occupational-therapy-in-eb-cpg |
| Clinical practice Guidelines: Oral health care for children and adults living with epidermolysis bullosa |
WILEY |
Debra International |
Pdf paper |
English |
https://www.debra-international.org/oral-health-care-in-eb-cpg |
| Pain care for patients with epidermolysis bullosa: best care practice guidelines |
BMC Medicine |
Debra International |
Pdf paper |
English |
https://www.debra-international.org/pain-care-in-eb-cpg |
| Physiotherapy for epidermolysis bullosa: clinical practice guidelines |
Orphanet Journal of Rare Diseases |
Debra International |
Pdf paper |
English |
https://www.debra-international.org/physiotherapy-cpg |
| DEBRA International Physiotherapy in EB Clinical Practice Guidelines Webinar |
Debra International |
Debra International |
Online Seminar |
English |
https://debra-international-org.zoom.us/webinar/register/rec/WN_-1voTY21TLOP4dbriNppZw?meetingId=44ZY3ZSyS1QmPViz2sd7yG744z8y33u8HFZ-4gnMSHiODvChjqV_W5yxLjkImeqE.-SED4Uy7rHzcwcFs&playId=&action=play&_x_zm_rtaid=yhvhZe-IQOWgdJ0jb21zsw.1673344088898.db93afee010453a284990b8d5c9db49c&_x_zm_rhtaid=195 |
| Recommendations on pregnancy, childbirth and aftercare in epidermolysis bullosa: a consensus-based guideline |
British Journal of Dermatology |
Debra International, Debra UK |
Pdf paper |
English |
https://www.debra-international.org/pregnancy-childbirth-aftercare-cpg |
| Psychosocial recommendations for the care of children and adults with epidermolysis bullosa and their family: evidence based guideline |
Orphanet Journal of Rare Diseases |
Debra International, Debra Norway |
Pdf paper |
English |
https://www.debra-international.org/psychosocial-care-in-eb-cpg |
| International consensus best practice guidelines skin and wound care in epidermolysis bullosa |
Wounds UK |
Debra International |
Pfd guidelines |
English, Spanish |
https://www.debra-international.org/skin-and-wound-care-in-eb-cpg |
| Supporting sexuality for people living with epidermolysis bullosa: clinical practice guidelines |
Orphanet Journal of Rare Diseases |
Debra International, Debra Norway |
Pdf paper |
English |
https://www.debra-international.org/supporting-sexuality-in-eb-cpg |
| EB health care videos |
Debra International |
Debra International |
Youtube video |
English |
https://www.youtube.com/watch?v=rKS3QLVr860&list=PLg-p3alRhWuEjzjJ7i5Eb2nRdj3KNr2-n |
| Debra Belgium publications |
Debra Belgium |
Debra Belgium |
Pdf (infographics, publications, flyer) |
English, Dutch, French |
https://www.debra-belgium.org/nl/debra-belgium/publicaties/ |
| Ayudas técnicas y discapacidad |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Ayudas-tecnicas-y-discapacidad.pdf |
| Beneficios del certificado de Discapacidad |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Beneficios-del-Certificado-de-Discapacidad.pdf |
| Investigación social |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N45_Investigacion-social.pdf |
| Enfermería a domicilio |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N47_BienEstar-Enfermeria-a-domicilio.pdf |
| Nuevos Centros de Referencia en EB y derivaciones |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Nuevos-Centros-de-Referencia-en-EB-y-derivaciones-Revista-EB-n48.pdf |
| Resumen de prestaciones y ayudas a la discapacidad |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Resumen-prestaciones-y-ayduas-a-discapacidad.pdf |
| Avances en Investigación |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Avances-Investigacion-ESTARBIEN_46.pdf |
| El papel de DEBRA en la Investigación |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/El-papel-de-DEBRA-en-la-investigacin-revista-EB-N48.pdf |
| Ensayo clínico de terapia celular sistémica |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Ensayo-clnico-de-terapia-celular-sitmica_-Revista-EB-N48.pdf |
| Estudio comparativo sobre Investigación en EB |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Estudio-comparativo-sobre-investigacion-en-EB-ESTARBIEN_46.pdf |
| Guías de mejores Prácticas Clínicas, el poder del trabajo en red |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Guas-de-prcticas-clnicas-el-poder-del-trabajo-en-red-revista-EB-N48.pdf |
| Avances internacionales en Investigación |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N47_BienEstar-Avances-Internacionales-investigacion-EB.pd |
| Empleo de células madre mesenquimales para tratamiento de la EB |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N47_BienEstar-Empleo-celulas-madre-mesenquimales-para-tratamiento-EB.pdf |
| Terapias para EB en españa y el mundo |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N47_BienEstar-Terapias-para-EB-Espana-y-mundo.pdf |
| Trasplante de médula ósea para EBDR |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N47_BienEstar-Transplante-Medula-Osea-para-EBDRsg.pdf |
| Un exitoso ensayo abre nuevos horizontes en Investigación |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Un-exitoso-ensayo-abre-nuevos-horizontes-en-investigacin-revista-EB-n48.pdf |
| Anestesia en enfermedades cutáneas |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Anestesia-en-enfermedaes-cutneas.pdf |
| Beneficios de la playa y la piscina en la EB |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Beneficios-de-la-playa-y-la-piscina-en-la-Epidermolisis-bullosa.pdf |
| Cómo elegir el calzado ideal |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Como-elegir-el-calzado-ideal.pdf |
| Complicaciones musculoesqueléticas en personas con EB |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Complicaciones-musculoesqueleticas-en-personas-con-EB.pdf |
| Complicaciones oftalmológicas |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Complicaciones-oftalmologicas-en-EB.pdf |
| Diagnóstico prenatal y diagnóstico preimplantacional |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Diagnostico-prenatal-y-diagnostico-pre_implantacional-EB.pdf |
| Elección de apósitos Para heridas |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Eleccion-de-apositos-para-heridas.pdf |
| El papel de la enfermera de referencia en neonatos con EB |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/ElPapeldelaEnfermeradeReferencia-en-NeonatosconEB.pdf |
| Estenosis esofágica |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Estenosis-esofagica-en-pacientes-con-Epidermolisis-bullosa.pdf |
| Identificación de heridas infectadas |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Identificacion-heridas-infectadas-ESTARBIEN_46.pdf |
| La Enfermería de diálisis ante enfermedades raras |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/La-enfermeria-de-dialisis-ante-enfermedades-raras.pdf |
| La importancia de los vendajes |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N44_2013_La-Importancia_vendajes.pdf |
| Nutrición |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N45_Nutricin-en-EB.pdf |
| Consejos para prevenir infecciones durante la cura |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N47_BienEstar-7-consejos-para-prevenir-infecciones-durante-la-cura.pdf |
| Consejos nutricionales |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N47_BienEstar-Consejos-nutricionales-para-EB.pdf |
| Podología |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Podologia-en-EB.pdf |
| Preguntas frecuentes en Enfermería |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Preguntas-frecuentes-en-enfermera-Revista-EB-N48.pdf |
| Prurito en EB |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Prurito-en-EB.pdf |
| Repercusiones en el contexto educativo |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Repercusiones-en-el-contexto-educativo-ESTARBIEN_46.pd |
| Preparación psicológica para la cirugía |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Preparacion-psicologica-para-la-cirugia.pdf |
| Cuidarse para poder cuidar |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N45_Cuidarse-para-cuidar.pdf |
| Las falsas creencias se multiplican al hablar de sexualidad y discapacidad |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Las-falsas-creencias-se-multiplican-al-hablar-de-sexualidad-y-discapacida-revista-EB-n48.pdf |
| La relajación para reducir tensión y ansiedad asociada al dolor infantil |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/La-relajacion-para-reducir-tension-y-ansiedad-asociada-al-dolor-infantil.pdf |
| La importancia de cuidarse para poder cuidar |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/La-importancia-de-cuidarse-para-poder-cuidar-revista-EB-N48.pdf |
| La familia resiliente crece a pesar de la adversidad |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/La-familia-resilientecrecer-a-pesar-de-la-adversidad.pdf |
| Escolarización |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Escolarizacin-del-nio-con-Piel-de-Mariposa.pdf |
| De qué hablamos cuando hablamos de sexualidad |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/De-qu-hablamos-cuando-hablamos-de-sexualidad-Revista-EB-N48.pdf |
| Cómo fomentar el autoestima |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Como-fomentar-la-Autoestima.pdf |
| Autonomía personal |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Autonomia-personal.pdf |
| Resumen de prestaciones y ayudas a la discapacidad |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Resumen-prestaciones-y-ayduas-a-discapacidad.pdf |
| Nuevos Centros de Referencia en EB y derivaciones |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Nuevos-Centros-de-Referencia-en-EB-y-derivaciones-Revista-EB-n48.pdf |
| Enfermería a domicilio |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N47_BienEstar-Enfermeria-a-domicilio.pdf |
| Investigación social |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/N45_Investigacion-social.pdf |
| Beneficios del certificado de Discapacidad |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Beneficios-del-Certificado-de-Discapacidad.pdf |
| Ayudas técnicas y discapacidad |
DEBRA Spain |
DEBRA Spain |
Pdf guidelines |
Spanish |
https://d3afc8hatrp5rg.cloudfront.net/wp-content/uploads/2019/03/Ayudas-tecnicas-y-discapacidad.pdf |
| Informations for teachers |
DEBRA Canada |
DEBRA Canada |
Pdf Guideline, youtube video |
English, French |
https://debracanada.org/pages/about-eb-info-teachers |
| Information for medical Professionals |
DEBRA Canada |
DEBRA Canada |
Pdf guidelines |
English, French |
https://debracanada.org/pages/information-for-medical-professionals |
| EB Patient Guides & Infographics |
DEBRA Canada |
DEBRA Canada |
Website guides and Infographics |
English, French |
https://debracanada.org/pages/about-eb-info-for-families |
| EB Awareness Ribbon |
DEBRA Canada |
DEBRA Canada |
Images |
English, French |
https://cdn.shopify.com/s/files/1/0352/8533/6204/files/EBAW-ribbon-DEBRA_Canada.png?v=1634405131 |
| COVID-19 Information booklet |
DEBRA Canada |
DEBRA Canada |
Booklet |
English, French |
https://cdn.shopify.com/s/files/1/0352/8533/6204/files/covid-19-information-booklet.pdf?v=1594660160 |
| EB Handbook |
DEBRA Canada |
DEBRA Canada |
Handbook |
English, French |
https://cdn.shopify.com/s/files/1/0352/8533/6204/files/EB_Handbook_English_V3_Final.pdf?v=1602062384 |
| EB Fact Sheet |
DEBRA Canada |
DEBRA Canada |
Pdf guidelines |
English, French |
https://cdn.shopify.com/s/files/1/0352/8533/6204/files/eb-fact-sheet.pdf?v=1594660499 |
| DEBRA Fact Sheet |
DEBRA Canada |
DEBRA Canada |
Pdf guidelines |
English, French |
https://cdn.shopify.com/s/files/1/0352/8533/6204/files/debra-factsheet-20170118.pdf?v=1594662475 |
| DEBRA Brochure |
DEBRA Canada |
DEBRA Canada |
Brossure |
English, French |
https://cdn.shopify.com/s/files/1/0352/8533/6204/files/debra-brochure-2017-en-lowres.pdf?v=1594660371 |
| What is EB? Infographics |
DEBRA Canada |
DEBRA Canada |
Infographic |
English, French |
https://cdn.shopify.com/s/files/1/0352/8533/6204/files/EB_inforgraphic_Poster_ENG_1.pdf?v=1602063770 |
| I have EB Awareness Card |
DEBRA Canada |
DEBRA Canada |
Card |
English, French |
https://cdn.shopify.com/s/files/1/0352/8533/6204/files/eb-cardsv2.pdf?v=1594659297 |
| Learn About Welcoming someone with EB to your Classroom |
DEBRA Canada |
DEBRA Canada |
Youtube video |
English, French |
https://www.youtube.com/watch?v=XoS5WKSEdqw |
| Occupational therapy |
Debra International |
Debra International |
Youtube video |
English |
https://www.youtube.com/watch?v=qxQqA_8s88U&list=PLg-p3alRhWuEjzjJ7i5Eb2nRdj3KNr2-n&index=3 |
| Constipation Management |
Debra International |
Debra International |
Youtube video |
English |
https://www.youtube.com/watch?v=r8wOmPRGnlo&list=PLg-p3alRhWuEjzjJ7i5Eb2nRdj3KNr2-n&index=4 |
| Podiatry (foot care) in eb |
Debra International |
Debra International |
Youtube video |
English |
https://www.youtube.com/watch?v=HSvOsDbtKt0&list=PLg-p3alRhWuEjzjJ7i5Eb2nRdj3KNr2-n&index=5 |
| Laboratory diagnosis |
Debra International |
Debra International |
Youtube video |
English |
https://www.youtube.com/watch?v=4t45l8wGjZY&list=PLg-p3alRhWuEjzjJ7i5Eb2nRdj3KNr2-n&index=6 |
| Oral care in Eb |
Debra International |
Debra International |
Youtube video |
English |
https://www.youtube.com/watch?v=UvZh2DpxisA&list=PLg-p3alRhWuEjzjJ7i5Eb2nRdj3KNr2-n&index=7 |
| Psychosocial care in eb |
Debra International |
Debra International |
Youtube video |
English |
https://www.youtube.com/watch?v=0xNjirjRXFg&list=PLg-p3alRhWuEjzjJ7i5Eb2nRdj3KNr2-n&index=8 |
| Pregnancy, Childbirth and aftercare |
Debra International |
Debra International |
Youtube video |
English |
https://www.youtube.com/watch?v=mem_veys4Yo&list=PLg-p3alRhWuEjzjJ7i5Eb2nRdj3KNr2-n&index=9 |
| Physiotherapy for EB |
Debra International |
Debra International |
Youtube video |
English |
https://www.youtube.com/watch?v=JCoGOvTx8bo&list=PLg-p3alRhWuEjzjJ7i5Eb2nRdj3KNr2-n&index=10 |
| Péče o kůži pacientů |
Debra Czech Republic, MUDr. Hana BUČKOVÁ Ph.D., MUDr. Ing. Jana KÝROVÁ Ph.D. |
Debra Czech Republic |
Pdf Paper |
Czech |
https://static.viaaurea.eu/d/ebcentrum.cz/files/1073.pdf/s-afcc25477eba |
| VÝŽIVA PŘI ONEMOCNĚNÍ |
Debra Czech Republic, Mgr. Michaela Halbrštátová |
Debra Czech Republic |
Pdf Paper |
Czech |
https://static.viaaurea.eu/d/ebcentrum.cz_dev/files/744.pdf/s-000823010a80 |
| Výživa při dysfagických potížích |
Debra Czech Republic, Mgr. Hana Holišová |
Debra Czech Republic |
Pdf Paper |
Czech |
https://static.viaaurea.eu/d/ebcentrum.cz/files/577.pdf/s-bcd3b7901d91 |
| NUTRIČNÍ OPATŘENÍ U ZÁCPY |
Debra Czech Republic, Ing. Bc. Gabriela Janíčková |
Debra Czech Republic |
Pdf Paper |
Czech |
https://static.viaaurea.eu/d/ebcentrum.cz/files/572.pdf/s-cc1c00a69c3e |
| Potřebná součást výživy pro pacienty s EB |
Debra Czech Republic, Mgr. Michaela Halbrštátová |
Debra Czech Republic |
Pdf Paper |
Czech |
https://static.viaaurea.eu/d/ebcentrum.cz/files/799.pdf/s-cb3d7c8934a4 |
| Dovolte mi vzlétnout |
Debra Czech Republic, Mgr. Klára Dvořáková |
Debra Czech Republic |
Pdf Paper |
Czech |
https://static.viaaurea.eu/d/ebcentrum.cz/files/1216.pdf/s-335ebe693214 |
| Biblioteca EB |
Debra Brasil |
Debra Brasil |
Library |
Portuguese, English |
https://debrabrasil.com.br/biblioteca-eb/ |
| Epidermólisis bullosa, causas, patología y diagnóstico |
Debra México |
Debra México |
Youtube video |
Spanish |
https://www.youtube.com/watch?v=vBOFA1UkReg |
| How do I use the apósitos to cure EB wounds in the skin? |
Debra México |
Debra México |
Youtube video |
Spanish |
https://youtu.be/vdORy8DDm_o |
| Papá y Mamá de hijo con Epidermólisis Bullosa en armonía |
Debra México |
Debra México |
Youtube video |
Spanish |
https://www.youtube.com/watch?v=bRdtoqtmIkc |
| L’ÉPIDERMOLYSE BULLEUSE: Les derniers articles |
Debra France |
Debra France |
Articles |
French |
https://www.debra.fr/fiches-pratiques/ |
| L’anesthésie et l’EBH |
Debra France |
Debra France |
Pdf guidance |
French |
https://www.debra.fr/wp-content/uploads/2021/06/Fiche-Anesthesie-et-EBH.pdf |
| Les soins ophtalmologiques |
Debra France |
Debra France |
Pdf guidance |
French |
https://www.debra.fr/wp-content/uploads/2021/06/Fiche-Soins-ophtalmo2021.pdf |
| Le prurit et l’EB |
Debra France |
Debra France |
Pdf guidance |
French |
https://www.debra.fr/wp-content/uploads/2021/06/Fiche-Prurit2021.pdf |
| La douleur et l’EB |
Debra France |
Debra France |
Pdf guidance |
French |
https://www.debra.fr/wp-content/uploads/2021/06/Fiche-Douleur.pdf |
| Nutrition et enfant |
Debra France |
Debra France |
Pdf guidance |
French |
https://www.debra.fr/wp-content/uploads/2021/06/Fiche-Nutrition-et-enfants-EB.pdf |
| Les infections cutanées |
Debra France |
Debra France |
Pdf guidance |
French |
https://www.debra.fr/wp-content/uploads/2021/06/Fiche-Infections-cutanees.pdf |
| L’incapacité à s’alimenter chez le nourrisson |
Debra France |
Debra France |
Pdf guidance |
French |
https://www.debra.fr/wp-content/uploads/2021/06/Fiche-Incapacite-a-salimenter.pdf |
| Les urgences |
Debra France |
Debra France |
Pdf guidance |
French |
https://www.debra.fr/wp-content/uploads/2021/06/Fiche-Urgences2021.pdf |
| Le bilan sanguin |
Debra France |
Debra France |
Pdf guidance |
French |
https://www.debra.fr/wp-content/uploads/2021/07/Fiche-bilan-sanguin.pdf |
| Jules Gastronomie & Compagnie |
Debra France |
Debra France |
Children's booklet |
French |
https://www.debra.fr/wp-content/uploads/2021/09/nutricia-fr_bd-jules-ncp-service.pdf |
| Manuel de soins pour l’épidermolyse bulleuse héréditaire |
Debra France |
Debra France |
Pdf guidance |
French |
https://www.debra.fr/wp-content/uploads/2021/09/2020-0952_Brochure_EpidermolyseBulleuse.pdf |
| Peau et Corps en bonne sante |
Debra France |
Debra France |
Infographics |
French |
https://www.debra.fr/wp-content/uploads/2021/03/Infographie-soin-des-plaies.pdf |
| Les Cahiers d'Orphanet - Vivre avec une maladie rare en France |
Debra France |
Debra France |
Pdf guidelines |
French |
https://www.debra.fr/wp-content/uploads/2016/03/Vivre_avec_une_maladie_rare_en_France.pdf |
| Accueillir en classe un enfant atteint d’épidermolyse bulleuse... |
Debra France |
Debra France |
Pdf guidelines |
French |
https://www.debra.fr/wp-content/uploads/2022/05/Guide-ecole2022.pdf |
| Protocole National de diagnostic et de Soins (PNDS) |
Debra France |
Debra France |
Pdf paper |
French |
https://www.has-sante.fr/upload/docs/application/pdf/2021-10/synthese_mg_epidermolyses_bulleuses_hereditaires.pdf |
| Dossier de Presse |
Debra France |
Debra France |
Pdf dossier |
French |
https://www.debra.fr/wp-content/uploads/2022/10/DP_DEBRA_2021-V6.pdf |
| Plus forts, ensemble! |
Debra France |
Debra France |
Pdf brossure, Form |
French |
https://www.debra.fr/wp-content/uploads/2022/02/z-Depliant-DEBRA-2022.pdf |
| ABCDE en EB |
Debra Colombia |
Debra Colombia |
Pdf guideline |
Spanish |
https://drive.google.com/file/d/18ALR8OqeeWzWuar9lOSvcTvQd9mftTrL/view?usp=share_link |
| Guía practica Debra |
Debra Colombia |
Debra Colombia |
Pdf guideline |
Spanish |
https://drive.google.com/file/d/1wBvbWw0xBwpMGuAVzMPnzQZJqjphB6Yu/view?usp=share_link |
| El duelo - proceso de afrontamiento |
Debra Colombia |
Debra Colombia |
Pdf guideline |
Spanish |
https://drive.google.com/file/d/1sQmpl0MroY6i6XZdOh_6ANCBSrmdUaFj/view?usp=share_link |
| Manejo del Dolor y técnicas de Afrontamiento |
Debra Colombia |
Debra Colombia |
Pdf guideline |
Spanish |
https://drive.google.com/file/d/1ScZTa3Bc8ux0XfmGXbZoOyxssv6DwAu8/view?usp=share_link |
| FOLLETO ANSIEDAD - DEBRA. |
Debra Colombia |
Debra Colombia |
Brossure |
Spanish |
https://drive.google.com/file/d/1VDMgNgtl9cTsJOwlvh-BC4elyo-SJ9SN/view?usp=share_link |
| PROPUESTA PARA LA ELABORACIÓN DEL PROTOCOLO DE GESTIÒN EDUCATIVA EN PROCESOS DE INCLUSIÓN PARA NIÑOS Y NIÑAS CON EPIDERMÓLISIS BULLOSA |
Debra Colombia |
Debra Colombia |
Pdf protocol |
Spanish |
https://drive.google.com/file/d/1Hwk_aJmG5XcfdVoG9xhV1Z50LghJJKw5/view?usp=share_link |
| EB Handbook |
EB House Austria |
EB House Austria |
Web page with Pdf files |
German, English, Italian, Spanish |
https://www.eb-haus.org/en/eb-handbook/ |
| Explanatory Video about EB |
DEBRA Austria |
EB House Austria |
Video |
English, English with subtitles, German, German with subtitles |
https://www.eb-haus.org/en/about-us/eb-house-news/2020/what-is-a-butterfly-child-easily-explained/ |
