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Counselling and its role in the treatment of Epidermolysis bullosa
Read moreCounselling plays a very important role in the treatment of patients with EB. The condition is in many cases degenerative, leading not only to physical disability, but also to social isolation. Patients and their families often need to contend with the distress of having to accept the diagnosis of a disease that has no cure […]
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Celebrating milestones at the annual Aloha Golf Club Golf and Gala event, supporting people with Butterfly Skin
Read moreOn the weekend of the 8th & 9th of June the Aloha Golf Club hosted the XVII Butterfly Children’s Golf and Gala event, along with special guests Noemi Jimenez and Danny Hartley. The €41.800 raised will go towards supporting and caring for children with this rare and painful condition. Now in its 17th year this […]
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Actor Antonio Velazquez and Muay Thai world champion, Yohanna Alonso, contributed to raise awareness for EB condition
Read moreDozens of people joined the renowned Spanish actor and the current combat sport world champion, to climb the 1200 m to the top of La Concha Mountain in aid of the Butterfly Children’s Charity. The event was the 4th of its kind and raised € 8000: There are over 500 people affected by EB in […]
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Supporting people with Epidermolysis Bullosa in Vietnam and Cuba
Read moreDEBRA in Spain is the founding member of the international network of DEBRA groups supporting people with EB in countries where the support system is currently inexistent. Our network includes “DEBRA without borders” which is made up of a group of professionals and volunteers who travel beyond their frontiers to help others. Visiting Vietnam The co-coordinator for family support from Australia, Simone Baird, travelled to Hai Phong in Vietnam along with two […]