In May 2022, we had the great fortune of bringing together nine Spanish-speaking countries together for the 1st Ibero-American Meeting of EB Online "I Encuentro Iberoamericano de Epidermólisis bullosa (EB) online"
Representatives from DEBRA Argentina, DEBRA Colombia, Alas de Mariposa – Cuba, DEBRA Chile, DEBRA Spain, DEBRA Mexico, Dominican Republic, Angelitos de Cristal – Peru, and Uruguay joined.
All groups introduced themselves and explained how they are organised and work. Some countries have several members of staff, other countries only have volunteers, and others are only made up of a family that wants to go one step further and do something for the rest of the families with EB in their country.
Each country is different in terms of culture and organisation, but we all had several things in common: our mother language (Spanish), our work with people with EB and their families, our need to make the disease known, and to seek day-to-day improvement in care and treatment for EB. So, we felt like family 😊
All the presentations were very useful, and we were able to share, give advice, and teach each other. As a result of the meeting, several proposals emerged:
create a WhatsApp group to continue communicating and sharing
repeat the Ibero-American Meeting - each year a different country will be commissioned to host
organise ourselves to help other nearby countries to solve doubts or create DEBRA groups
Overall, it was a very useful and worthwhile meeting.
- EBWB Spanish Team
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