Epidermolysis bullosa

Next, we will list the most relevant reference entities in the world of EB and rare diseases. In them we can find information on EB, advances in basic and clinic investigation, and good practice guides for professionals and affected people or families.

Reference entities specific for EB:

• (in Spanish) DEBRA Butterfly Skin (www.pieldemariposa.es): Reference association at a national level in Epidermolysis bullosa or Butterfly Skin, declared of Public Use by the Interior Ministry.
• DEBRA International (www.debra-international.org): Global web of national groups who work in the place of people affected by EB. Their vision is to make sure that people living with EB have access to the best quality support and medical care, at the same time they promote the development effective of treatments and cures for EB. In the DEBRA International website we can find the different DEBRA groups existing at a global level, currently it is present in over 50 countries.
• EB Research Clinet (www.eb-clinet.org): The key objectives of this initiative are to improve the medical care for people with EB and, providing a foundation for clinical trials, accelerating the path towards the cure for this disease.
• EB Research Network (www.eb-researchnetwork.org): Net of EB patient organizations who finance the investigation and associate to promote its transformation for the clinical benefit. This net has as an objective to provide information regarding the investigation being done on EB for scientific, medical, affected people and industry teams. EB-ResNet gestions the financing of promising EB investigation projects around the world in the name of its members. Its wallet includes from basic investigation to preclinic and clinic trial.
• EB Connect (https://ebconnect.org/): It is an online private platform for the epidermolysis bullosa community. Once registered, you can contact other people on a global level, follow the events and virtual meetings, use the forums, or have didactic videos available to which you are given access, among other things.

Rare diseases reference entities:

• FEDER (www.enfermedades-raras.org): FEDER unites all the families communities entities with rare diseases in Spain, making their common needs visible and proposing solutions to improve their quality of life, representing their interests, defending their rights and promoting concrete improvements to achieve their complete social inclusion. DEBRA Butterfly Skin has been a member of FEDER since its foundation.
• EURORDIS (www.eurordis.org): it is a non-governmental alliance directed by organizations of patients and individual people active in the field of rare diseases in Europe, that has as an objective defending the rights, improving the knowledge and improving the quality of care of people with rare diseases in Europe.
• ORPHANET (https://www.orpha.net/): Orphanet is the rare diseases reference information portal and orphan drugs, addressed to all audiences. Orphanet’s objective is to contribute to the improvement of the diagnosis, care and treatment of patients with rare diseases.
• CREER (www.creenfermedadesraras.es): the Statal Reference Centre of Attention for People with Rare Diseases (Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras) develops two fundamental tasks, those of the Reference Services and those of Direct Attention to families (Spain).
• CIBERer (www.ciberer.es/en): At the Biomedicine Investigation Centre in the Net of Rare Diseases (Centro de Investigación Biomédica en Red de Enfermedades Raras, CIBERER) they work with the fundamental objective of investigating in order to find answers and solutions that allow to improve the quality of life of the people affected by these pathologies (Spain).