We are very actively engaged with the following patient advocacy organisations worldwide, who support patients and their families who are affected by the genetic disorders we work on:
- British Skin Foundation
- Fight for Sight
- DEBRA - Dystrophic Epidermolysis Bullosa Research Association
- Ichthyosis Support Group
- Le coeur au peid (PC Project France)
- National Eczema Society
- PC Project
- Eczema Outreach Scotland
We also run PC Project - an international patient advocacy organizaton with pachyonychia congenita providing patients with support and genetic diagnosis as well as orchestrating research.
NEED HELP WITH A GENETIC SKIN DISORDER?
If you suffer from a genetic skin or eye disorder and need diagnosis, help or support not covered by the organisations listed above, please contact us using the link at the top of page and we will try to help you.