EI Cure Project Canada
About Us
In 2023 we welcomed a son into our family who was diagnosed very quickly with Epidermolytic Ichthyosis (EI), which is an extremely rare skin disease. We quickly learnt the positives and challenges of having a child with EI. EI causes skin fragility, which results in large blisters, temperature regulation issues, and can cause mobility issues.
We discovered that since the disease is so rare (Only 1 in 300,000 people are affected) there are limited resources available and very limited research being done to find a cure.
We connected with Helen Lill in Switzerland who founded the EI Cure Project, which is a global not-for-profit organisation including patient advocates and world-class gene-editing researchers collaborating together to cure Epidermolytic Ichthyosis. Helen and a global team of ambassadors, board members, charity trustees, and EI support group members work together as volunteers to raise funds for research to find a cure, connect those with EI, and help provide educational resources on EI. To learn more about this global organization, please visit their site.
The EI Cure Project was immensely helpful and reassuring to us when we were grappling in the early days with our rare diagnosis. Above all, the EI Cure Project gave us hope, and so we decided that we wanted to extend this organization to Canadians.
In December 2023, we founded EI Cure Project Canada with the aim of helping to fund research for a cure, support Canadians with information on what resources are available in Canada, in addition to help source the best products in Canada, and help Canadians to connect with other Canadian families.
100% of donations will be going to help Canadian families dealing with EI, to raise awareness of EI and to fund research to find a cure for EI. All of the people working for this foundation are volunteering their time and administration costs are covered by a private donor.
Together we are giving hope to those impacted by EI that a cure is possible.
If you ever have any questions about EI or want to get more involved please do not hesitate to reach out.
Many thanks and best regards,
Rachel Wagner and Jordan Arndt
Co-founders of EI Cure Project Canada