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Winners of the Albert Jovell prize for the #IHAVEUNDRESSED campaign
Read moreWe were delighted and honoured to receive a prize valued at 1500€ for the #IHAVEUNDRESSED campaign under the category of “A Campaign aimed specifically at raising awareness and developed by a charity in the health sector” More than 400 people attended the prize-giving event at the Nouvel auditorium at the Reina Sofia museum in Madrid: […]
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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 […]