Two years ago, in November 2022, an Ichthyosis Support Group (ISG) webinar focusing on Epidermolytic ichthyosis (EI) (also known previously and currently by many as Bullous congenital ichthyosiform erythroderma BCIE, Keratinopathic ichthyosis KPI, Epidermolytic hyperkeratosis EHK), sparked Helen Lill's interest to create a whole new wave of fundraising to support research for people with Epidermolytic Ichthyosis (EI). 

EI Cure Project - Helen Lill

As I look back on what has been achieved since that day, I will always remain thankful to the ISG and the opportunities that they continue to create for the ichthyosis community.

It now brings me great pleasure to introduce you to the EI Cure Project. We are a new Global Not-for-Profit Organisation, which was founded in April 2023, and we now have charity / tax-exemption status in the UK, Switzerland, the US, and Canada. Our focus is on advocating for better care for people affected with Epidermolytic Ichthyosis (EI), and funding research into developing new treatments for EI. You can find a more detailed look at Our Research and our Research Areas of Interest on our website.

At the EI Cure Project, you will find that we often talk about the ISG and how important they are. The ISG represents all types of ichthyosis, and that collective voice makes a much bigger difference than we can alone for EI. Our organisations work together to provide more support to our whole ichthyosis community.

We work alongside other amazing Ichthyosis charities like the ISG, to provide condition-specific support to those with EI. If you are affected with EI or have a child affected with EI, you may find our EI Resources page can help you find some evidence-based guidance on how to care for your EI skin. In addition, if you are new to the diagnosis, you can find a number of personal testimonies which include how EI can affect daily life, and examples of different care routines around the world, and how people with EI might look.

The EI community is a very close one, we manage a private support group just for those with EI, and this is enormously helpful because we can discuss the nuances of EI, such as blistering and skin fragility, that aren’t found in other types of ichthyosis. We draw a lot of
our care advice from European and International guidelines on Ichthyosis and Epidermolysis Bullosa, and we also borrow specific advice from publications on atopic dermatitis and psoriasis too. EI has many biological and genomic similarities with all of these conditions, so it is important to balance care advice accordingly. We find that if we treat EI skin like many other types of ichthyosis, then it fails to thrive and can even increase blistering and fragility, whereas if we take a more tailored approach, many find they get better relief from their symptoms.

Our organisation is dedicated to understanding EI in every way that we can in order to give the best advice for daily care, but also to ensure that we can fund appropriate research and develop patient-centric treatments in the future. To support this, we have a strong group of researchers, scientists, and doctors in our Research Alliance. Our Research Alliance volunteers their time for the organisation, and are all excited to be working towards a common goal of having more therapeutic options to be able to offer choices to patients with EI. Please visit our website if you would like to learn more.

The difference with the EI Cure Project, is that we understand EI on a much deeper level, and can offer more day-to-day support to individuals with EI specifically. In terms of funding, a donation to the EI Cure Project goes directly to research into finding new treatments for EI; we don’t fund any other type of activity with your donations. The ISG also funds research for ichthyosis, but they also do an enormous amount of work to support the wellbeing of the whole ichthyosis community by organising family conferences, days out, children's camps, and special workshops and webinars on patient-specific issues like mental health, nutrition, and how to navigate child support services in the UK. These things are so incredibly important to families affected with any type of ichthyosis, so I hope you can see that both organisations deserve your support and donations!

The EI Community is and will always be intertwined with the ISG. The best way to understand our working relationship, is that we join forces to create even more awareness and funding for Epidermolytic Ichthyosis than ever before!

Watch the podcast recorded in 2024 with Mandy, ISG Co-Founder and Medical & Communications Manager; Helen, EI Cure Project Founder and Head of Research; and Catherine ISG Ambassador and EI Cure Project Trustee, to hear about how we work together to build a brighter future for everyone in the ichthyosis community. 

If you have EI, please do get in touch, and check out our website to learn more. You can also follow us on Facebook, Instagram, X, and Threads.

Thank you,

Helen Lill
Founder and Head of Research at the EI Cure Project