EI CURE EI CURE PROJECT PROJECT
The EI Cure Project is a global not-for-profit organisation including patient advocates and worldclass gene editing researchers collaborating to find a cure for Epidermolytic Ichthyosis (EI).
EI is a rare (1 in 300,000) genetic skin condition which can be inherited or occurs spontaneously during pregnancy.
EI is characterised by blistering and skin fragility, alongside excess skin growth (Hyperkeratosis) of the joints and flexures which limits mobility.
There is no cure, so it's necessary to make lifestyle changes to reduce the risk of wounds and infections, and try to manage the pain and discomfort with long baths, exfoliation, wound care, and by applying many different creams.
The care routine takes 2-4 hours every day, and most people with EI need disability support for life.
Care is costly and doesn't get easier with age.
EI is known as an ‘Orphan disease’ because the cost for research outweighs the potential profit from finding a cure. This means there is no incentive to fund research.
The EI Cure Project aims to facilitate preclinical research through to clinical product in 3 phases.
The EI Cure Project researchers know how to cure EI, they just need the funds to prove it.
Our phase 1 target is $375,000 for 3 PhD scholarships needed for the preclinical research.
Please help us fund this life-changing research.
With your help, we want to replace our children's suffering and endless care routines with happiness and freedom
Thank you for considering our cause.