Abdul spoke about the launch of a digital exhibition ‘Shine a light’ to raise awareness about rare diseases
Abdul also emphasized the significance of this awareness campaign for the patients who were unaware of X-linked Hypophosphataemia(XLH)
The interview provides a profound understanding of Kyowa Kirin’s initiatives to help patients suffering from XLH
Smriti: Can we start by discussing XLH (X-linked Hypophosphataemia)? What is the cause of XLH, and its epidemiology (Global and G7)?
Abdul: X-linked Hypophosphataemia (XLH) is a rare, genetic, and progressive renal phosphate wasting disorder that causes abnormalities in the bones, muscles, and joints. It is a life-long, progressive and debilitating disease that can severely impact the quality of life. Around one in every 20,000 to 60,000 people are thought to live with XLH. Although it can sometimes appear in individuals with no family history of the disease, it is usually passed down from a parent who carries a defective gene on the X-chromosome.
Smriti: Can we talk about how Kyowa Kirin raises awareness of XLH generally?
Abdul: At Kyowa Kirin, we are proud of our work in XLH, but we know there is still more to be done to improve awareness, diagnosis, and care for this debilitating disease. The Shine a Light on XLH campaign is a major part of our awareness work, as it’s a campaign drawing attention to the scale and symptoms of XLH in a memorable, creative way. Furthermore, Shine a Light on XLH aims to highlight the impact living with the disease can have on all aspects of a person’s life, raising awareness of the struggles people living with XLH can face on a daily basis, which often go unseen.
Beyond our work with Shine a Light on XLH, another recent and notable KKI initiative saw us use creativity once more to develop the ‘Faces of XLH’ program, a photographic project undertaken by KKI in Germany for Rare Disease Day 2022. We worked with renowned photographer Martin Schoeller to photograph XLH patients and exhibit these photos in order to draw attention to XLH.
We have also worked in partnership with the International XLH Alliance and several other patient organizations to amplify the patient voice through our XLH White Paper, calling for improved awareness of XLH among healthcare professionals and enhanced health and social care for people living with the disease.
Finally, we have collaborated with patient organizations in Spain, Italy, and Portugal to publish children’s books that are intended for families living with XLH, helping to explain how living with a rare disease can impact a child’s daily life, while celebrating that every child is special and unique, whether or not they have XLH. Our efforts are always focused on creating tools, resources, and support that will improve the lives of people living with XLH and generate further awareness and understanding of the disease.
Smriti: What initiatives do Kyowa Kirin plan to take to help patients suffering from XLH?
Abdul: Kyowa Kirin remains committed to supporting the XLH community and the patient groups that help them so that we can make people living with XLH smile. The Shine a Light on XLH initiative is a major cornerstone of this work and one that we are very proud of, given the way it allows those living with XLH to tell their stories and raise awareness of the impact of this debilitating disease can have on people’s lives.
We’re also currently enrolling one of the world’s first and largest XLH registries, with the ambition of having 1,200 people living with XLH included by 2025 across 22 countries. This registry will provide data that will give the XLH community real insights into living with the disease and help us identify further ways we can support people living with XLH and their families and carers. We remain committed to generating more real-world evidence that captures the true lived experience of people living with XLH and are currently working on a number of studies so that we can ultimately work to improve diagnosis, treatment, and outcomes for people living with XLH.
Additionally, we’re working to assist healthcare professionals through our Genetic Health Map tool, which allows them to trace a person living with XLH’s family history and better understand how the disease may have been inherited. Finally, we also plan to continue to expand and evolve the Shine a Light on XLH campaign so that it can continue to impact as many people as possible and remain a valuable tool for the XLH community for years to come.
Smriti: Could you give our readers a brief overview of how working with patient communities has helped your company raise awareness of unmet needs in XLH?
Abdul: The people living with XLH who took part in the campaign showed a huge amount of bravery to share their stories publicly. They have all experienced significant challenges living with XLH, and we are in awe of the resilience, positivity, and determination every single person in this initiative has shown. Without their involvement, we couldn’t have accurately depicted the realities of living with XLH or developed this resource, helping to raise awareness of the disease and the impact it can have on a person’s daily life. The campaign wouldn’t have been possible without them and the patient organizations who supported us. I’m so thankful to everyone who was involved in this campaign, and for all they do – and continue to do – to shine a light on XLH.
Smriti: How has this Shine a Light awareness campaign impacted patients that are diagnosed with this disease and those that weren’t aware of XLH?
Abdul: One person who took part in the campaign highlights that growing up, there was no awareness of XLH and that she felt as though she was the only person in the world living with this disease. It wasn’t until she was in her 20s that she was finally diagnosed with XLH and was able to start receiving appropriate support. Having this diagnosis helped her attitude towards her symptoms change in a positive way, where she now feels more confident to ask for help from others when she needs it. Her diagnosis also helped make sure that when her daughter was born, she was able to be tested for XLH as a baby, meaning she received her diagnosis at a much younger age and was able to begin receiving support for her symptoms sooner. This campaign has allowed people living with XLH to share their experiences and raise awareness for those who may be struggling with the symptoms of an undiagnosed disease, and we’re grateful to be able to tell these stories so that it might help others who may be living with XLH receive their diagnosis and appropriate care sooner.
The Shine a Light on XLH materials have now been distributed through patient organizations across the UK, Ireland, and Nordic countries and are helping to improve awareness, understanding, and care of XLH. In terms of the exhibition itself, this has now been accessed by approximately 700 people. We’re also collecting feedback from visitors to the exhibition in order to ensure that the resource is as valuable as possible so that we can continue to evolve its contents.
Smriti: What additional information will be delivered through the immersive virtual exhibition?
Abdul: As well as the stories of 11 people living with XLH, the exhibition also provides detailed background information on the disease, its causes, and symptoms. At the end of the exhibition, you can access case studies focusing on each of the campaign participants and a Shine a Light on XLH educational brochure, which is intended for people who would like to do further reading and learn more about XLH. In the future, we hope to be able to translate the exhibition into different languages across Europe so that it can be accessed and understood by more people, further improving the reach of this campaign so that ultimately, we can support more people living with XLH.
Smriti: “Shine a Light on XLH” What is the significance of light in terms of XLH disease?
Abdul: Phosphorus is well known for its glowing properties and can be found in everyday items like safety matches and fireworks. However, it also has a vital role in many of the body’s important processes. Those with XLH have an imbalance of phosphorus in the body that causes abnormalities in the bones, muscles, and joints and can severely impact their quality of life. By harnessing the glowing qualities of phosphorus, we are highlighting the huge impact this element has on the bodies and lives of people living with XLH. Vitally, we’re also championing the need to ‘Shine a Light on XLH’ and improve awareness and understanding of this debilitating disease.
Source: Pexels
About the Author:
Abdul Mullick is the President & Chief Executive Officer of Kyowa Kirin International, a subsidiary of Kyowa Kirin. Dr. Mullick successfully led the launch of two new rare disease products across Europe, the Gulf Cooperation Council, and other growth markets, including for the treatment of X-linked hypophosphatemia. He also led a drive to enhance patient and customer care, resulting in improved profitability, as well as accelerating the digital transformation across the entire value chain. Dr. Mullick graduated with a Ph.D. in Molecular Biology from Bristol University in the UK.
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