As part of Sobi’s commitment to Haemophila and encouraging every person living with haemophilia to liberate their lives, employees in the UK will also be raising vital funds to support the efforts of a leading UK patient organisation, The Haemophilia Society, by embarking on a 10-hour charity cycling challenge at its office in Cambridge (pictured). Each hour cycled by the team represents 1,000 people, recognising the 10,000 people living with Haemophilia in the UK. Further fundraising efforts include a bake sale and an Easter egg hunt.
Haemophila is a rare inherited bleeding disorder, in which the blood does not clot properly, taking longer than normal for the bleeding to stop.1 This can severely impact a person’s quality of life both physically, such as a reduction in mobility due to recurrent joint bleeds2, which can limit a person’s daily activities,3 and psychologically, having a negative impact on their mental wellbeing.4
Despite recent advancements in treatment, people living with Haemophilia often make compromises in their everyday lives. This insight, among others, stems from a large-scale, pan-European ethnographic study of the lives of people living with Haemophilia undertaken by Sobi in the summer of 2018.5 The in-depth research exposed the challenges, aspirations and unmet needs, behaviours and perceptions related to life with Haemophilia, inspiring the creation of the Liberate Life vision.
Neil Dugdale, Sobi’s Vice-President and General Manager, for the UK-RoI; Nordics-Baltics explains: “This study shows that people with Haemophilia perceive they live a ‘normal’ life, yet making daily compromises should not be their reality. On top of the physical challenges faced by many, emotional burdens lead to caution when participating in daily activities, driven by uncertainties over what their treatment allows them to do.”
Guido Oelkers, President and CEO, says Sobi has been inspired by these and other insights to invite the Haemophilia community to challenge the status quo of Haemophilia care. Historically, treatment has been about enabling survival and stability. With today’s therapies, treatment can be tailored to meet individual needs and aspirations.
Guido Oelkers says: “Liberate Life symbolises our intentions and our actions, and embodies our dedication to working for people living with Haemophilia, protecting them from bleeds, joint pains and mental burdens – helping them feel safe so they can live a life without compromise. Liberate Life not only spells out our vision for the future of Haemophilia care but also serves as a call to action for involvement from patients, advocates and healthcare professionals.”
For further information please visit: www.Liberatelife.co.uk
About Haemophilia
- In the UK, there are 8,000 people with Haemophilia A and 1,800 people with Haemophilia B6
- Haemophilia treatment can either be preventative, whereby medicine is used to prevent bleeding episodes, or it can be provided on-demand, when a period of prolonged bleeding occurs1
- Haemophilia generally affects males on the maternal side7
- Most bleeds as a result of the condition are internal, into the joints or muscles – some of which can be life-threatening and require immediate treatment7
- The severity of Haemophilia can either be mild, moderate or severe - people with severe Haemophilia can bleed frequently and often for no apparent reason, whereas those with mild Haemophilia usually only have prolonged bleeding after serious injury or surgery8
About Sobi™
At Sobi, we are transforming the lives of people affected by rare diseases. As a specialised international biopharmaceutical company, we provide sustainable access to innovative therapies in the areas of haematology, immunology and specialty care. We bring something rare to rare diseases – a belief in the strength of focus, the power of agility and the potential of the people we are dedicated to serving. The hard work and dedication of our approximately 1050 employees around the globe has been instrumental in our success across Europe, North America, the Middle East, Russia and North Africa, leading to total revenues of SEK 9.1 billion in 2018. Sobi’s share (STO:SOBI) is listed on Nasdaq Stockholm. You can find more information about Sobi at www.sobi.com
References
1. NHS – Haemophilia. Available at: https://www.nhs.uk/conditions/haemophilia/ (Accessed April 2019)
2: Karin Knobe, Erik Berntorp. Haemophilia and joint disease: pathophysiology, evaluation,
and management. Journal of Comorbidity 2011;1:51–59. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5556421/pdf/joc-01-051.pdf (Accesssed April 2019)
3. Haemophilia Federation of America - Pain and mobility are major problems for patients with hemophilia – Available at: http://www.hemophiliafed.org/news-stories/2015/12/pain-and-mobility-are-major-problems-for-patients-with-hemophilia/ (Accessed April 2019)
4. Frederica R.M.Y Cassis. Psychosocial care for people with Hemophilia. 2007. Available at http://www1.wfh.org/publications/files/pdf-1198.pdf (Accessed April 2019)
5. Ethnographic Study. Sobi data on file. August 2018.
6. UK National Haemophilia Database Bleeding Disorder Statistics for 2017-2018. Available at: http://www.ukhcdo.org/wp-content/uploads/2019/04/2018_UKHCDO_Annual_Report_2017_18_Data.pdf (Accessed April 2019)
7. World Federation of Hemophilia. Guidelines for the management of haemophilia. 2nd edition. 2012. Available at: http://www1.wfh.org/publications/files/pdf-1472.pdf (Accessed April 2019)
8. Haemophilia. BMJ Best Practice. Available at: https://bestpractice.bmj.com/topics/en-gb/468/aetiology (Accessed April 2019)