DEBRA shares challenges faced by Butterfly Skin patients on International Rare Diseases Day with call for government support

The Spanish Butterfly Children Charity (DEBRA) marked International Rare Diseases Day on Tuesday, February 28 by calling on the government to provide more resources for hospitals specialising in the rare condition.

Butterfly Skin or EB, a rare and incurable genetic condition, causes extreme fragility of the skin and can lead to both external and internal wounds covering up to 80 per cent of the body. With only two national centres for Butterfly Skin in the country, patients face delays in receiving vital care and treatment, which can have serious consequences.

DEBRA, the only national organisation offering support to families in Spain with Butterfly Skin, and aims to raise awareness of the challenges faced by families and the lack of resources available.

To further highlight these challenges, DEBRA is holding a social media campaign, “With you for a lifetime,” featuring eight families affected by Butterfly Skin disease and the barriers they face.

The Butterfly Children Charity, founded in 1993 by parents of a boy with EB, works to improve the quality of life for families through co-financing research projects and raising awareness of the disease. More resources for hospitals specialising in Butterfly Skin are essential to ensure patients receive the care they desperately need.