Rhiannon Morgan

I’m Rhiannon and I live in South Wales, UK. I was born with KRT1 EI with PPK and was incredibly lucky to be diagnosed shortly after my birth. Advocating for disability, visible differences and shaping societal models in which we view difference is a significant passion of mine.

My background is varied - I have a Bachelor’s and a Master’s in History, where I then went into voluntary work in the museum and heritage sector, later going into the third sector where I was involved in workshops with adults with learning disabilities.

Then, I went into marketing, where I began to understand the impact of social media, learned how to video edit and subtitle, and craft press releases. I later decided that this wasn’t for me. I enjoyed being creative, but I loved working with people more.

I am currently employed on a project that helps disabled people find supportive and inclusive routes into employment, and through this role I’m often engaging with government bodies to market the project and spread awareness of disability inclusion to employers.

In my spare time, I am a campaigner for Changing Faces where I am involved in several active campaigns as a Welsh delegate. From this, I have spoken to BBC Wales, WalesOnline, BBC Radio and also the Metro in efforts to raise awareness of what life is like with a visible difference like Ichthyosis.

I am so pleased to be a trustee for the EI Cure Project. Together, we can make significant strides in scientific research and bring further awareness of EI to medical practitioners.