EI Cure Project UK

EI Cure Project UK Help us reach for the sky and find a cure for EI!

The EI Cure Project fundraises and supports EI-related research for people living with the rare skin condition, Epidermolytic Ichthyosis which affects 1 in 300,000 people.

I’m delighted to be representing the EI Community at the 3rd World Congress for Rare Skin Diseases in Versailles.This po...
14/06/2026

I’m delighted to be representing the EI Community at the 3rd World Congress for Rare Skin Diseases in Versailles.

This poster summarises the EI Community Survey completed at the end of 2025, and is due to be published in JEACP later this year.

This is an important piece of work because it’s the first paper to be written by the EI Community alongside Dermatologists to help educate healthcare practitioners about daily care routines and research priorities from the patient and parent perspective.

At EI Cure Project we are not only doing our best to fund research to find a cure, but we are also doing everything we can to help provide healthcare practitioners with the tools they need to help manage EI.

If you’d like to learn more about EI, please visit the EI Resources page on our website: www.eicureproject.com/ei-resources

Thank you for your interest 🥰


The connection between skin and ADHD…At the World Health Organisation meeting in Geneva, I was lucky enough to meet Prof...
09/06/2026

The connection between skin and ADHD…

At the World Health Organisation meeting in Geneva, I was lucky enough to meet Professor Carsten Flohr. His clinical passion is helping people with Atopic Dermatitis (eczema), and his current research project is about to add another BIG dimension to how we think about inflammatory skin conditions…

His team at Kings College London are investigating whether systemic inflammation in the blood (seen with chronic skin conditions) contributes to brain inflammation.

Participants in the ‘Mind and Skin’ study undergo functional MRI scans while performing specific tasks to assess brain activity.

There is a working hypothesis that individuals with eczema share behavioural traits similar to those seen with ADHD, even without an ADHD diagnosis.

Preliminary observations show close links between eczema and ADHD-like traits.

The results of the study are not yet available, but researchers are currently analysing functional MRI data alongside detailed sleep studies to better understand these connections between eczema and ADHD.

For more information, and to listen to some great interviews with Professor Flohr, please visit: https://ppopderm.org/project/mind-and-skin-consortium/

Whilst this research is about eczema, and not about Epidermolytic Ichthyosis (EI), we know that the inflammatory profile of EI is very comparable to eczema, so it’s reasonable to assume that the findings may also be applicable to EI.

In our EI community, a simple survey showed that ADHD diagnoses were above the global average. What remains unknown is the cause - early trauma, genetic predisposition associated with the EI mutation, or perhaps chronic inflammation is the link we’ve been looking for.

A big thank you to the team at KCL, and a big thank you to St John’s Dermatology and the Skin Conversations team for their great work sharing news of the study.

We look forward to learning more… ❤️


Our EI Heroes for the week are a group of friends from Alrewas, a small but spirited village in Burton-on-Trent, UK ❤️Th...
06/06/2026

Our EI Heroes for the week are a group of friends from Alrewas, a small but spirited village in Burton-on-Trent, UK ❤️

This super group of young men have all decided to support their friend, Alfie Lancashire, who has KRT10 Epidermolytic Ichthyosis.

When Alfie Lancashire was born, his parents recount that they were told “He won’t have much of a life”

These are not words that any parent ever wants to hear…

And yet Alfie is now 13 years old, and lives a very full life, with a truly great group of friends.

Team Alfie have decided to do the Sutton Fun Run each year for their friend, in order to raise important research funding for the EI Cure Project UK (www.eicureproject.com)

So far Stanley Lomas, Jem Eardley, and Dylan Brooksure have raised over £1000 for our cause.

“It takes a village to raise a child” and that phrase could never be more true than for a child with a rare disease, and for the love that Alrewas has shown the Lancashire family.

We are so grateful to these young EI Heroes, so please join me in congratulating them for their kindness and community spirit! 👏👏👏

30/05/2026

The World Health Organisation has 192 member states…

On paper this is impressive – 192 member states all working together to make healthcare better around the globe.

On paper is one thing, but actually being here at the WHO Headquarters in Geneva, and being able to see all these majestic flags fluttering in the breeze, is another thing entirely.

I’m not exactly sure what combination of factors led to my invitation to join a meeting here, but it was an incredible opportunity to see this inspiring place, and to talk with many world leaders about how to make a difference through the WHA resolution on skin disease.

It was great to meet with the leaders of International Alliance of Dermatology Patient Organizations - GlobalSkin, and my patient advocacy group colleagues from Ern-Skin Comunication. On a more personal note, it was such a pleasure to talk with Toni Roberts about the complexities of mother-daughter-carer relationships when growing up with a rare blistering skin disease.

It can often be lonely being a founder of a non-profit for a very rare skin disease, feeling the weight of your communities daily challenges. Opportunities like these remind me that I am one small but valiant part of a much bigger wave of progress for everyone suffering with sore skin…

Change is coming, it might take time, but please be reassured that there are many great people working hard to make the future brighter… ❤️


22/05/2026

This incredible woman shares what EI Cure Project means to her…

Thank you for this beautiful video of your journey towards hope ❤️

www.eicureproject.com

22/05/2026

This incredible woman shares what EI Cure Project means to her…

Thank you for this beautiful video of your journey towards hope ❤️

I’m deeply honoured to be invited as a special guest to contribute to an official WHO side-event at their headquarters i...
17/05/2026

I’m deeply honoured to be invited as a special guest to contribute to an official WHO side-event at their headquarters in Geneva, “From Resolution to Action: Implementing the WHA Resolution on Skin Diseases.”

I’m so grateful for the opportunity to represent the rare skin community in this important global discussion — where patient voices must help to inform policy, priorities, and implementation.

With my voice I represent so many - EI Cure Project, European Network for Ichthyosis, ERN-Skin, and Global Skin - I’m honoured and grateful to represent you all.

Ensuring skin health is recognised, resourced, and acted on requires collective commitment.

I’m so proud to contribute to that momentum. 🌍


EI Cure Project is proud to be an associated member of the European Network for Ichthyosis. Please see their shared mess...
09/05/2026

EI Cure Project is proud to be an associated member of the European Network for Ichthyosis. Please see their shared message, helping to unite us all for the special month of May…

International Ichthyosis Awareness Month (IAM) has begun. Over the next few weeks, we’ll be sharing a global perspective on how the European ichthyosis community views and needs other affected individuals, professionals, and local associations. The closer we are to each other, the more we can support one another.

Depending on where you live in Europe, please feel free to check out the other associated organisations and find out more about what they do to support their national communities.

We are all proud to be united for Ichthyosis Awareness Month ❤️


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I think it’s entirely fitting that the Diffin Family are named as the first official EI Heroes post of Ichthyosis Awaren...
04/05/2026

I think it’s entirely fitting that the Diffin Family are named as the first official EI Heroes post of Ichthyosis Awareness Month 2026! 💪

This incredible family and their entire community have just jumped in and given everything they’ve got to support Daniel, Lara, and their beloved baby Julia ❤️

Daniel - the hours of training, the early mornings, the late nights, and the mental and physical burden that comes with a marathon - you’ve carried it all in your daughter’s honour.

Lara - caring for a baby with EI is no small feat. The hours of care, the uncertainties associated with a rare disease, and the anxiety of wounds, pain, and infection can become too much to handle all too easily. Carrying all this while your husband dedicates hours to marathon training is also worthy of a mention!

To all of your friends and family - for choosing to support Daniel, Lara, and Julia, you have all recognised the injustice of having a rare disease — of knowing no help will come unless we decide to change the future by acting together.

Thank you so much to everyone in Lara and Daniel’s community for giving so kindly and graciously to our cause. It has been mind-blowing to see that target being smashed time and time again, and it just keeps getting bigger and bigger…
https://www.justgiving.com/page/daniel-diffin-4?utm_medium=FR&utm_source=CL

All these acts of kindness show the world that an EI diagnosis is deserving of attention, and that the research funded by EI Cure Project is absolutely ESSENTIAL in securing a brighter future!

You have brought so much joy to so many people, and you are truly deserving of the title ‘EI Heroes’!

Lara, Daniel, and Julia - you have inspired so many and we are so grateful - thank you for being our Number 1 EI Heroes today ❤️❤️❤️



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