Butterfly Skin is a RARE GENETIC INCURABLE PAINFUL condition
Imagine being fearful of comforting your baby, knowing that to hold them causes them pain.
Imagine being fearful of comforting your baby, knowing that to hold them causes them pain.
Imagine that their skin is as fragile as a butterfly’s wing and that those simple activities like eating and walking cause severe pain and distress. Imagine your baby being treated in a hospital where the healthcare professionals have no medical experience of the condition and being told that there is currently no cure.
This is the reality for families with Butterfly Skin.
We work to ease the pain.
Raising awareness
We provide information and raise awareness, underlining the needs of our families through news publications, social media and our events. Our objective is to promote understanding and campaign for inclusion.
We help our families
Our team of nurses, psychologists and social workers help over 300 families from birth to end of life care and provide information and training for health care workers and educational settings.
We support research projects
We finance research projects, bringing the science and the hope closer to our families. We are committed to working with the global community through DEBRA international.
Get involved
Your support helps over 300 families.
Make a donation
Thanks to your donation families can continue to receive the support they so urgently need.
Involve your business or workplace
Promote Social Corporate Responsibility and set change in motion.
Purchase with purpose
For special occasions, gifts or corporate events. By shopping with us proceeds go directly to supporting our families.
Words of appreciation
from some of our members and supporters.