This week’s blog is written by Victoria Hayes, Director of Public Affairs, Northern Cluster, Kyowa Kirin. Kyowa Kirin launched the Shine a Light on XLH Virtual Exhibition on 16 May, 2022 to coincide with the International Day of Light. The campaign raises awareness of the impact that X-linked Hypophosphataemia (XLH) can have on all aspects of peoples’ lives. The campaign beautifully highlights the role phosphorus plays in the disease through captivating art and storytelling.
Learn more and check out the exhibition!
We launched the Shine a Light on XLH Virtual Exhibition to tell the stories and experiences of 11 amazing people based across Europe who live with X-linked Hypophosphataemia (XLH), which is a whole body, whole life, whole family rare metabolic bone condition that impacts every single aspect of peoples’ daily lives. We wanted to empower campaign participants by allowing them to live a novel experience: showcasing their perspective on XLH through digital make up; giving them a platform where their rare condition meets art.
The virtual exhibition is an immersive space in which those visiting can find out more about XLH, the stories of those who took part in the campaign and access XLH-related resources. The exhibition appears like a real-life art gallery, allowing you to move virtually around the space and access content. The project is based on creativity, virtual collaboration. Most importantly it aims to deliver a meaningful message, to increase awareness and understanding of the impact of XLH on peoples’ lives.
- How difficult is it to get a diagnosis?
- How does XLH impact daily tasks?
- Your family unit?
- Your standing in society?
- Your mental health and emotional wellbeing?
By harnessing the glowing nature of phosphorus, the Shine a Light on XLH campaign aims to enlighten people with XLH and healthcare professionals to the vital role that the mineral plays in this rare condition.
Despite the struggles that living with XLH have meant for participants, their resilience, positivity, and determination to live life to the fullest shines through their stunning portraits and stories in the exhibition. Thank you to them so much for openly sharing their experiences, which are sure to impact many people – living with XLH, a rare condition and beyond.
We, at Kyowa Kirin, are humbled and in awe of every single person in this campaign, and are so inspired by each of their stories, as well as the bravery they have shown in sharing their experience so openly.
This campaign has been nearly two years in the making but was well worth it. We do hope it will live on, with more participants joining, from the UK, the Nordics and beyond. We will continue working with the community to ensure it evolves as an educational resource, as well as a source of community for people living with XLH and their friends and family.
This campaign serves as an important reminder of how living with XLH can impact all aspects of a person’s life, and how crucial it is that we continue to work towards better outcomes for people living with rare diseases, such as XLH. This campaign serves as an important reminder of how living with XLH can impact all aspects of a person’s life, and how crucial it is that we continue to work towards better outcomes for people living with rare diseases, such as XLH.
I personally feel very privileged to have built such positive relationships with campaign participants, I have felt very emotional listening to how well participants cope against all odds. It made me smile and I hope it will make many more people smile too!