BUR-EB

BUR-EB survey on EB burden. Help us learn about the real burden of EB!

Welcome to the BUR-EB project! Our objective is to know the socio-economic burden of EB in 7 European countries.

The collaboration that we request is very simple, we ask you to fill out a questionnaire, with which we want to collect information on the resources used and how the disease affects your quality of life. Likewise, we are interested in knowing the burden of the main caregiver.

The survey is completely anonymous and at no time can the answers be related to personal data or medical history.

If you want to join this study, please, click on the links below according to your country of residence.

Austria – Österreich

Sigmund Freud University & DEBRA Austria – https://onlinebefragungen.sfu.ac.at/bur-eb/

Bulgaria – България

Асоциация Булозна Епидермолиза – https://www.facebook.com/AssociationEB

France – France

ERN-Skin – https://ern-skin.eu/ejp-and-other-research-projects/

Necker Hospital  – Magec Dept – https://hopital-necker.aphp.fr/plateforme/etude-de-recherche-projet-bur-eb-fardeau-socio-economique-de-lepidermolyse-bulleuse-eb-pour-des-enfants-atteints-deb-ages-de-0-a-17-ans-ou-des-patients-adultes-18-ans-ou-pl/

French Rare Diseases platform – https://maladiesrares-necker.aphp.fr/magec/#1718199618869-f0bcc758-c586

FRT (Fondation René Touraine) – https://fondation-r-touraine.org/projet-bur-eb-fardeau-socio-economique-de-lepidermolyse-bulleuse-eb-pour-des-enfants-atteints-deb-ages-de-0-a-17-ans-ou-des-patients-adultes-18-ans-ou-plus-et-pour-leurs-aid/

Nice HCP – https://www.crmrpsud-nice.fr/les-etudes-cliniques

Toulouse HCP – https://www.chu-toulouse.fr/-epidermolyses-bulleuses-

Germany – Deutchland

PENDING

Hungary – Magyarország

PENDING

Italy – Italia

Ospedale Bambino Gesù – https://www.ospedalebambinogesu.it/epidermolisi-bollosa-ecco-come-partecipare-al-progetto-bur-eb-per-migliorare-l-assistenza-di-chi-soffre-di-questa-malattia-164560/

DEBRA Italia – https://debraitalia.com/progetto-europeo-bur-eb/ 

Spain – España

PENDING