EI Cure Project Podcasts

Founder Helen Lill explains:

-What is Epidermolytic Ichthyosis?

-How does it affect quality of life?

-What is the EI cure project?

-Why do we need to raise funds?

Founder Helen Lill interviews Dr Julia Reichelt and Professor Matthias Schmuth with the following questions:

-What do we know about gene editing and EI?

-Why do we need to fund further research?

-When can we recruit our first PhD student?

-Where will the students be doing their research?

-What will the PhD students be doing?

-How will the PhD students be supervised?

-Thoughts on the EI cure project?

Founder Helen Lill interviews Board Member and UK Trustee Rhiannon Morgan on the following topics:

-How KRT1 EI with PPK affects her daily life

-How EI influenced school, university, and employment

-What it was like to grow up with EI

-Her experiences with her skin and strangers

-Hopes and fears for the future

-Positive experiences as a result of having EI

-What the EI Cure Project means to her

Founder Helen Lill interviews Board Member and UK Trustee Hannah Lark on the following topics:

-What it was like growing up with EI

-How EI influenced her school and career choices

-How EI influenced her journey to motherhood

-How oral acitretin helps her EI and what implications this medication has on pregnancy

-What the process of PGD-IVF was like

-What it’s like to have a rare genetic condition and how that affected her and her partners’ choices to have a family

In 2024, the EI Cure Project Not-for-profit organisation launched a global dance challenge to raise awareness of rare blistering skin disease Epidermolytic Ichthyosis. Every person who completed the 3-minute dance routine contributed 150 reps towards the target of 300,000 (Chosen to reflect the prevalence of EI). This video is a compilation of all the challenge events that happened around the world. A total of 1,121 people took on the challenge and raised over 300,000 reps.

What happens when 3 ichthyosis champions work together?

This podcast includes a discussion between Helen Lill, Founder and Head of Research at the EI Cure Project; Mandy Aldwin-Easton, Founder and Medical Communications Manager for the UK Ichthyosis Support Group; and Cat Lancashire, ISG Ambassador and EI Cure Project UK Trustee.

EI Cure Project Founder, Helen Lill talks to 140 middle-school students (Ages 11 to 14) and their teachers at The American School in Switzerland (TASIS) in a special assembly held during Rare Disease Awareness Month, February 2025.

Founder of the EI Cure Project, Helen Lill, takes you on a journey about the Global Health Challenges faced by the Rare Disease Community, and goes into further detail about the rare disease that affects her youngest daughter who lives with Epidermolytic Ichthyosis (EI).

Helen Lill, Founder of the EI Cure Project shares the story of her experiences with Epidermolytic Ichthyosis, alongside a stunning evening of entertainment, with carefully chosen songs and performances to reflect the journey of her sweet daughter.

EI Cure Project Founder, Helen Lill, orchestrated a concert on Rare Disease Day 2025 to raise awareness of the global health challenges faced by the 300 million people living in the world with a rare disease. This highlights video captures the spirit of the event, and shows just how many people's hearts and minds were captured by this global problem.