Volunteer Ireland - *Volunteer Ireland Awards Spotlight* Liz's daughter Claudia was born 15 years ago with a rare genetic skin disease called Recessive Dystrophic Epidermolysis Bullosa (EB). EB is an incurable skin
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Mother was accused of BURNING her sons after a rare condition left them with 'butterfly skin' | Daily Mail Online
Butterfly child' gets help from specialist with experience in treating her rare skin condition | MUSC Health | Charleston SC
![His skin is as fragile as the wings of a butterfly': Mom's heartbreaking account of son's rare skin condition – Love What Matters His skin is as fragile as the wings of a butterfly': Mom's heartbreaking account of son's rare skin condition – Love What Matters](https://lwm-a2.azureedge.net/uploads/2018/04/rare_skin_condition-860x645.jpg)
His skin is as fragile as the wings of a butterfly': Mom's heartbreaking account of son's rare skin condition – Love What Matters
![Boy born with rare 'Butterfly disease' that leaves him with no skin refuses surgery because he's scared of dying on the operating table | The Scottish Sun Boy born with rare 'Butterfly disease' that leaves him with no skin refuses surgery because he's scared of dying on the operating table | The Scottish Sun](https://www.thesun.co.uk/wp-content/uploads/2018/01/nintchdbpict000381479107.jpg)
Boy born with rare 'Butterfly disease' that leaves him with no skin refuses surgery because he's scared of dying on the operating table | The Scottish Sun
![Multidisciplinary care for patients with epidermolysis bullosa from birth to adolescence: experience of one Italian reference center | Italian Journal of Pediatrics | Full Text Multidisciplinary care for patients with epidermolysis bullosa from birth to adolescence: experience of one Italian reference center | Italian Journal of Pediatrics | Full Text](https://media.springernature.com/lw685/springer-static/image/art%3A10.1186%2Fs13052-022-01252-3/MediaObjects/13052_2022_1252_Fig1_HTML.png)