To mark World Haemophilia Day, Sobi™ is launching Liberate Life, a vision of life beyond haemophilia. In a series of long-term commitments, Sobi seeks to shape new standards, optimise treatment, build evidence, create sustainable access and provide community support in haemophilia care.
As part of Sobi’s commitment to haemophilia 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.
Each hour cycled by the team represents 1000 people, recognising the 10,000 people living with haemophilia in the UK.
Haemophilia is a rare inherited bleeding disorder, in which the blood does not clot properly, taking longer than normal for the bleeding to stop. This can severely impact a person’s quality of life both physically, such as a reduction in mobility due to recurrent joint bleeds, which can limit a person’s daily activities, and psychologically, having a negative impact on their mental wellbeing.
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.
The in-depth research exposed the challenges, aspirations and unmet needs, behaviours and perceptions related to life with haemophilia, and inspired the creation of the Liberate Life vision.
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.
Oelkers said: “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.”