EI Cure Project

EI Cure Project Global not-for-profit which funds research to find a cure for Epidermolytic Ichthyosis (EI)

Such a magical and poignant moment for my little EI rockstar…A glass wing butterfly decided that Arienne was the perfect...
02/09/2026

Such a magical and poignant moment for my little EI rockstar…

A glass wing butterfly decided that Arienne was the perfect landing pad.

Butterflies are so symbolic for anyone affected by a skin blistering and fragility disorder.

You would never have known it, but at the very same time she was suffering with quite a nasty infection on her leg after being bitten by a simple mosquito.

People always say “It looks so painful” and it is. The wounds throb, her whole leg hurts, and she’s afraid of every care episode to try to manage it and treat it…

And yet here she is, with all that, just smiling with joy because a butterfly chose her.

She’s my inspiration, my hero, and my reason for founding the EI Cure Project.

If you’ve never heard of Epidermolytic Ichthyosis before, it’s a rotten disease, but our kids keep smiling anyhow…

Please take a moment and learn more about EI, and consider helping us to fund research to find a cure.

www.eicureproject.com

I’m really hoping all that resilience and courage can be put to better use one day when we find a cure!


Introducing the first draft of the “EI Neonate Care Wheel”! 🤗I’ve been working hard on the first draft of the new “Inter...
12/08/2026

Introducing the first draft of the “EI Neonate Care Wheel”! 🤗

I’ve been working hard on the first draft of the new “International daily care recommendations for EI” following our intense Steering Committee Meetings on Day 2 of the EI Global Symposium.

I really want to make sure that when this information is published it isn’t left in another boring table that no one wants to read…

Instead, I came up with this, and I’m pretty pleased with how it turned out! I hope this will be a useful tool for Care Teams to use with a new EI baby in the NICU.

Of course, this diagram will be supported by text in the article to provide evidence to support each of the 24 statements - you’ll have to wait a bit longer for that to be published.

For now, please tell me what you think of the wheel, but remember to be kind…

The beating heart behind everything we do at the EI Cure Project is mine!

We don’t have a marketing team, or medical illustrators, or any fancy social media content creators… it’s all just me, jack of all trades, doing my best to be creative and make good decisions!

What do you think, would this have been useful to you as a healthcare professional OR as a new parent?

Many thanks for your kind consideration 🥰

PS. If you are looking for further guidance on EI care, please visit the EI Resources page on our website:
https://www.eicureproject.com/ei-resources


I’m so excited to join the Great Ormond Street Hospital (GOSH) team for this 1st Pediatric Course in Epidermal Different...
11/08/2026

I’m so excited to join the Great Ormond Street Hospital (GOSH) team for this 1st Pediatric Course in Epidermal Differentiation Disorders (EDDs).

If you’re a medical professional and would like to attend, please visit:
https://courses.gosh.org/event/615131/

A little synopsis about GOSH…
“Great Ormond Street Hospital is a world-leading children’s hospital in London, caring for ~76,000 young patients a year and pioneering treatments for rare and complex diseases. Founded in 1852 as the UK’s first dedicated children’s hospital, GOSH combines cutting-edge clinical care, research, and education to give seriously ill children the best chance of reaching their full potential.”

I’m deeply honoured to be invited to speak at this prestigious hospital, and am delighted to see the GOSH team leading the way with a dedicated clinical service for EDDs.

I’ll be joining a number of our EI Cure Project Research Alliance members on the program, including Professor Jemma Mellerio, Dr Joanna Jackow-Malinowska, Dr Gabriela Petrof, Professor Edel O’Toole, Dr Maria Bageta, and the fantastic EB and EDD clinical service lead, Dr Anna Martinez.

If you’d like to know more about caring for Epidermolytic Ichthyosis (EI), now called KRT-EDD-Epidermolytic, please see our EI Resources page for information on daily care, how to manage infections, useful skin care products, and a lot more:
https://www.eicureproject.com/ei-resources

Thank you for your kind attention 🥰



05/08/2026

EI Cure Project are delighted to share this short video of Professor Matthias Schmuth from Medical University of Innsbruck.

Matthias is a “Clinician Scientist” which means he sees patients in his dermatology clinic regularly, but he also leads scientific research projects too.

He is also an ERN-Skin expert for Ichthyosis, which means that you can be referred to him from anywhere in the world for teleconferencing support if you are lacking specialist care in your own country:
https://ern-skin.eu/medical-university-of-innsbruck/

If you ever have the pleasure of meeting Matthias, he is many things. He is incredibly smart, humble, and kind, and he really keeps his patients’ needs at the forefront of his research.

Matthias is also the Principle Investigator for an EI Cure funded research project entitled:
“Delivery of keratinocyte-targeting nano-carriers loaded with gene-editing tools to skin”

This project aims to explore one of the biggest challenges of gene therapy for genetic skin diseases, and that is to find a way to delivery gene-editing tools through intact skin (without open wounds, invasive grafts, or surgery).

If you’d like to read more about this exciting 3-year PhD project, please visit our research page for his project: https://www.eicureproject.com/our-research/daniela-ortner-tobider-and-matthias-schmuth

Matthias is one of the founding members of the EI Cure Project Research Alliance, and is very important to us. He is always there encouraging, supporting, and reassuring that what we are doing with EI Cure has immense value for an under-represented patient group

Behind the scenes, I know that Matthias is always there to help with a letter, a word of advice, a reference for a grant application, a video… and just about anything to help us on our way.

Many thanks to Matthias and his team. They are very much a part of our EI Cure Crew! Always on your side, and willing to do their part!

We can’t wait to learn more updates on this exciting project as we enter the projects third and final year this November!


Three weeks on from WCRSD 2026 and I feel it’s time to reflect. The World Congress for Rare Skin Diseases will always ho...
27/07/2026

Three weeks on from WCRSD 2026 and I feel it’s time to reflect.

The World Congress for Rare Skin Diseases will always hold special significance for me.

WCRSD is the ONLY event that focuses on RARE skin diseases. It’s like a hotbed of expertise and understanding of all the work needed to achieve a shared vision of a future with effective treatments for our rare communities.

Two years ago, EI Cure was still very new, and we were just a small group of researchers and patient advocates working together. WCRSD was the event that changed this for us.

This event is big enough to help raise awareness of a single rare disease in the sea of many, but it’s also small enough to facilitate one-to-one conversations that lead to impactful change…

I remember prepping for that first congress, reading the program, searching for the experts I wanted to talk to, and hoping I might find some enthusiasm for EI Cure’s mission.

Two years on, and I went from hoping to meet these world-renowned doctors and scientists, to sharing the stage with them and seeing our very first EI Cure funded project being presented!

EI Cure is still a small organisation, but events like WCRSD help us to be seen for what we are - an organisation with expert knowledge, that leads with skill, and a whole lot of heart.

WCRSD is an event organised by experts who reward hard work and help support and nurture this rare skin community - they somehow manage to see us all.

I genuinely love this event, and the smiles you see in these pictures are very real.

Here you can see me with other patient advocates, dermatologists, researchers, geneticists, and biotech representatives all sharing the same stage - as equals and as ambassadors for a shared vision.

Huge thanks and congratulations to Christine Bodemer, Rene Touraine Fondation, and ERN-skin for another super congress.


I am so happy to see this clinical trials pipeline from BioMendics LLC for their small molecule product TolaSure, curren...
03/07/2026

I am so happy to see this clinical trials pipeline from BioMendics LLC for their small molecule product TolaSure, currently featuring in the TAMES Trial for patients with severe EB Simplex.

This product is showing great promise at reducing blisters and maintaining blister-free areas after just 2 weeks of use!

(Source of data: https://biomendics.com/medical-professionals -trials-info)

It was such a pleasure to meet and sit down with Karen McGuire (BioMendics CEO) and Aleesha M. (BioMendics Clinical Research Scientist) at WCRSD 2026.

We were able to talk about how things are going with the current trial, the similarities between EB Simplex and EI, and we were able to talk about the potential for this great product to help with blistering and skin fragility for the EI Community.

We are working closely with BioMendics and our friends at Pachyonychia Congenita Project (PC Project) with the hope of developing a Phase 2 trial for EI and PC.

We don’t know when this will happen just yet, but please know we are working together to understand the needs of our communities and the potential behind this exciting new treatment.

This gives me so much hope for the future.

Thank you for keeping us in your hearts and minds BioMendics - our meeting left me feeling like our hard work at EI Cure Project has really been seen ❤️

Keep watching this space… the future is looking brighter already 💫


02/07/2026

What an opportunity I was given here at the WCRSD 2026! 💫

Two weeks ago, I was asked to be the patient voice for a roundtable discussion on the new EDD classification, but I admit that I wasn’t expecting to be offered the podium...

Thank you so much to the EI Community for sharing your thoughts, to my friends and colleagues at ERN-Skin and the European Ichthyosis Network, and to the EDD Symposium Patient Reps Group for all sharing their thoughts and seeking insights from their patient communities.

I hope I did you all justice!

This was a great experience, and sparked more debate from other patient reps and clinical dermatologists in the room, alongside the working party members who formulated the new classification.

I’m delighted to share that the group is open to some revisions in the new classification, and conversations about this topic have continued to echo throughout the congress.

I look forward to keeping lines of communication open, and would love to hear more from our communities in the comments ⬇️

Many thanks to my roundtable colleagues for giving me the floor .has.7 , it was a pleasure to be part of your team! 🥰



En route to the 3rd World Congress for Rare Skin Diseases, in Versailles, France. I’m honoured and excited to have been ...
30/06/2026

En route to the 3rd World Congress for Rare Skin Diseases, in Versailles, France.

I’m honoured and excited to have been asked to be a Roundtable Co-host for one of the sessions on Wednesday Morning.

The session will focus on the new Epidermal Differentiation Disorders Classification that has sparked some intense debate amongst medical professionals and patient organisations.

I’m delighted to be joining Edel O’Toole, Judith Fischer, Amy Paller, Cristina Has, and Suzanne Pasmans for the session.

My role is to represent the patient organisations that I work with including ERN-Skin, European Network for Ichthyosis, and of course the EI Cure Project (www.eicureproject.com)

I hope to better understand how the classification might help us in future, in addition to sharing the thoughts of our EI Community so far.

Looking forward to a lot of delegate participation in one of the opening sessions of the congress.

Please feel free to stop by and join the debate:
- Workshop 1, Wednesday, 10:05 to 11:35, Amphitheater



This week’s EI Heroes are the Peterson Family from California, USA.Mum Mikaela talks with such pride about her young son...
26/06/2026

This week’s EI Heroes are the Peterson Family from California, USA.

Mum Mikaela talks with such pride about her young son who is affected with KRT10 Epidermolytic Ichthyosis (EI):

“Watching your child go through painful skin issues, discomfort, setbacks, and challenges can be heartbreaking at times. But if there’s one thing my son has never lacked.. it’s resilience!💪🏼

From the moment he came into the world 5 weeks early.. he’s been a fighter! The first 3 weeks of life were spent in the NICU and those were honestly some of the hardest days of my life 💔

There was so much fear, uncertainty, and so many prayers whispered through tears…But even as a tiny baby, he showed everyone how strong he was.

Watching him grow and adapt to his challenges has been the greatest privilege of my life. ✨

There were milestones that once felt so far away and moments when I worried more than I can ever describe, but little by little, day by day, he kept pushing through everything in his own way.

Now, he is the happiest, sweetest, and most loving little boy. He is so full of personality, so FULL of life, and somehow always able to make everyone around him smile. He has the kindest heart and brings so much light into this world💫

Having EI is just one small part of who he is. He is SO much more. He is strong, beautiful, funny, resilient, loving, and truly one of the most special people I know 🫶🏽

Being his mom has taught me a kind of strength and love I never knew existed. He inspires me every day without even realising.

My son is my HERO, and I want to take this opportunity to raise awareness of EI and celebrate him - how far he’s come, everything he’s overcome, and the incredible young man that he is growing into 🌟

My miracle boy... I am endlessly proud of you. You are my hero, and you are loved more than words can ever say.” 🥰

Thank you so much to Mikaela for sharing this heartfelt story about her sweet boy 💙

If you’d like to learn more about EI and meet other children, please visit our website:
www.eicureproject.com/faces-of-ei

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