EI Cure Project Podcasts

Sometimes it nice to hear and see people talking instead of always having to read text on a screen. So here you will find a series of videos that we hope you find interesting, and that it helps you get to know us all a little better. Feel free to contact us anytime if you have any questions or concerns that you’d like to raise as a result of watching one of our videos, or perhaps you have a great suggestion for our next podcast. You’ll find a contact for all our board members and ambassadors easy to find, and we are always eager to hear from you.

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  • Podcast 1 - Introduction

    Podcast 1 - Introduction

    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?

  • Podcast 2 - Details of PhD studentships

    Podcast 2 - Details of PhD studentships

    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?

  • Podcast 3 - Interview with Rhiannon Morgan

    Podcast 3 - Interview with Rhiannon Morgan

    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

  • Podcast 4 - Interview with Hannah Lark

    Podcast 4 - Interview with Hannah Lark

    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