Raising awareness
About Butterfly Skin
Butterfly Skin is a rare disease, which is relatively unknown.
The work that we do to raise awareness is fundamental to improving the quality of life for families. Our aim is to show the reality of living with this condition: the condition is extremely complex and a high level of patient support and care is needed at all times, living in constant pain causes severe emotional distress and isolation.
Through a number of different campaigns we hope to encourage more people to get involved in helping and with this greater integration for our families.