X-linked Hypophosphataemia (XLH) is a rare disease that occurs when levels of the mineral phosphorus are low in the blood. Most doctors have never heard of XLH, which can lead to misdiagnoses. Despite XLH being a lifelong condition, it can be misconceived as a childhood disease, making it difficult for adults living with the condition to find specialists who can provide the right care.
Emily McKechnie was misdiagnosed with dwarfism when she was five. It took another 11 years for doctors to discover that she had been misdiagnosed, and that she was suffering from XLH. By then she had undergone several needless and painful surgeries and been prescribed unnecessary drugs.
Support and guidance for the XLH community: To provide a guiding light for people with XLH – and those closest to them – to help them navigate the labyrinth of health and social care while supporting them by managing cultural, economic and psychological challenges.
Re-writing the XLH story
Dispel the deep-rooted myth that XLH is an abstract children’s rare disease and reposition it, referencing people’s lived experiences. Our mission was to create a more emotive, memorable and impactful story about how XLH affects real people with relatable challenges, hopes and dreams.
To get closer to Patient Advocacy Groups: Including the PAG community in the awareness campaign was integral to its activation, to help us
build meaningful partnerships to last beyond the life of the campaign.
According to the white paper, The Unrecognised Burden of XLH on Adults published in 2019, Awareness of XLH, especially during adult life, is very low. There is a need to educate both patients and healthcare professionals about the need for ongoing specialist care. Patient group leaders participating in a survey also highlighted that there is a need for better access to information for patients about life with XLH.
Little information was available to support individuals with XLH as they transition from paediatric to adult services. Digital mapping revealed very few online resources met the high demand for information about the condition.
Existing patient support networks struggle to cut- through. Many patient advocacy group websites do not rank very strongly on Google, the availability of educational resources for patients is poor and there’s limited information for non-US patients.
To create one campaign focused on putting the disease in the spotlight using the link to the key disease indicator, the lack of phosphorus, which is commonly known as the light-emitting chemical. There were three core elements:
1.To increase public awareness of the disease
2.To bring the condition to life by sharing patients’ lived experiences
3.To get closer to patient advocacy groups, forge long-lasting partnerships on behalf of KKI to amplify the campaign and extend its reach
We chose International Day of Light, 16th May 2022, to launch the “Shine a Light on XLH” virtual exhibition in the United Kingdom, Ireland, and the Nordic countries, accompanied by a multi-channel promotional campaign to launch the initiative.
The exhibition profiled 11 people living with XLH, where their symptoms were brought to life through illuminated body make up to show the far-reaching physical, mental and emotional effects of the condition. The exhibition also included a resource centre with information and downloadable resources about the condition, where visitors could learn more about the people who took part in the campaign and their lives with XLH. Social media sharing buttons were included to improve the reach of the exhibition.
We provided a toolkit to patient advocacy groups across the United Kingdom, Ireland, and Nordic countries, who helped to promote the campaign and shared their reactions to the exhibition across their Facebook, Instagram, Twitter, and LinkedIn channels:
•International XLH Alliance
•Metabolic Support UK
•Cambridge Rare Disease Network
•Rare Disease UK
•Office for Rare Conditions Glasgow
•Same But Different
•Beacon for Rare Diseases
The creative was inspired by phosphorus’ ‘light bringing’ associations. Make-up artist, Mac Inerney (runner up, BBC’s Glow Up) was commissioned to interpret in body art, the impact XLH had on the lives of patients who live with the condition. He spent time with the 11 XLH patients featured in the exhibition to understand the impact of the disease on each of their lives and then brought their individual stories to life through digital body art.
Digital makeup techniques created the final images to illustrate the connection between phosphorus and XLH on the human body.
Since the launch, we’ve had 1196 visits to the exhibition from 768 unique visitors. The average session duration was 4 minutes and 7 seconds, indicating that visitors are truly engaging with the content. Although the resource centre only attracted 5% of visitors, the average time on this page was 11 minutes, 45 seconds, showing that this content piqued special interest.
We secured 11 pieces of media coverage, with an estimated average monthly readership of 12,881,645. This included an interview with campaign participant Emily McKechnie in iNews, which has a monthly readership of more than 10 million people.
We used paid LinkedIn content to reach professionals who work with rare diseases, as well as policymakers and journalists who are interested in rare diseases to drive traffic to the virtual exhibition. All ads performed above the industry benchmark, with 121,388 total impressions and an average clickthrough rate of 0.82%. Impressively, almost half of the policymakers and journalists we targeted saw the ads on LinkedIn, with the click-through rate in this group coming well above industry average (of 0.58%) at 1.6%.
As a result of the campaign, the client commissioned multiple translations of the website (German, Italian, Spanish), as well as an adaptation of the English version for the APAC region.
Oliver Gardiner, Chair International XLH Alliance, alliance of 23 international patient groups, was supportive of this campaign and provided a quote to include in the exhibition: “People living with XLH often experience a reduced quality of life. We support this campaign’s objective to improve recognition and understanding of this life-limiting disease”.
Check it out at www.shinealightonXLH.com.