RARE INSIGHTS |
Making the RARE voice heard
Today, as part of its commitment to supporting people with rare diseases, Cambridgeshire-based speciality healthcare company Sobi UK and Republic of Ireland (RoI) held a purple-themed fundraising funfair event in support of the juvenile idiopathic arthirits (JIA) awareness day ‘Wear Purple for JIA’. The event raised £352.62, which was tripled by Sobi UK and RoI, bringing the total amount donated to £1,057.86. ‘Wear Purple for JIA’ day is the annual fundraising and awareness-raising campaign from JIA at NRAS, the arm of the National Rheumatoid Arthritis Society (NRAS) specifically dedicated to helping those affected by JIA. In line with the purple theme, visitors to Sobi’s offices in Granta Park were greeted by an eye-catching purple balloon archway. The balloons directed them inside, where they could make donations to participate in purple-themed games such as ‘purple hook-a-duck’, ‘blackcurrant pong’, guessing the number of purple sweets in a jar, purple hula hoop and throwing balls into purple buckets. Winners could claim purple-themed prizes, including purple wine.  As well as the games, funds were also raised through a purple-themed cake sale, and ‘Wear Purple for JIA’ merchandise. Showing their dedication to raising awareness of JIA, the Sobi team were all dressed in ‘Wear Purple for JIA’ t-shirts and merchandise, and fairy wings. Anne Gilbert, Youth and Family Services Manager at NRAS said: “Although Juvenile Arthritis not a well-known condition, JIA is a debilitating disease which affects approximately 12,000 to 15,000 children and young people in the UK. It is great to see Sobi joining forces with our supporters across the country by taking part in ‘Wear Purple for JIA’ day, raising awareness of the condition and funds to help us continue to improve the information we provide and give support to all children with JIA and their families.”
JIA is a form of inflammatory arthritis which starts in children under 16, but may continue into later life. It is unclear what causes it. [1],[2] There are seven different types of JIA, with a variety of different symptoms which can include joint pain, rashes or fevers.1,2 JIA is thought to affect approximately 1 in 1,000 children in the UK under the age of 16, with between 1,000 and 1,500 children diagnosed each year.1 Neil Dugdale, Sobi’s General Manager for the UK and RoI, said: “Sobi supports a wide range of charities who provide support for those affected by rare diseases, and we place patient value at the heart of what we do as a company. We are proud to be able to help JIA at NRAS continue their inspiring work by wearing purple to raise awareness of JIA, and by putting on our fundraising event.” Sobi specialises in innovative treatments for rare diseases, including systemic-onset juvenile idiopathic arthritis (SJIA), the rarest of the seven JIA sybtypes.2 Despite its rarity, SJIA has the highest mortality rate, reported to contribute approximately two thirds of the total mortality rate for JIA.[3],[4] [1] JIA at NRAS. What is JIA? Available at: https://www.jia.org.uk/what-is-jia- (Accessed May 2018) [2] Grevich S & Shenoi S. Update on the management of systemic juvenile idiopathic arthritis and role of IL-1 and IL-6 inhibition. Adolescent Health, Medicine and Therapeutics 2017; 8:125-135 [3] Woo P. Systemic juvenile idiopathic arthritis: Diagnosis, management, and outcome. Nat Clin Pract Rheumatol 2006; 2(1):28-34. [4] Wallace CA & Levinson JE. Juvenile rheumatoid arthritis: Outcome and treatment for the 1990s. Rheum Dis Clin North Am 1991; 17(4):891-905 About Sobi™ Sobi™ is an international speciality healthcare company dedicated to rare diseases. Our vision is to be recognised as a global leader in providing access to innovative treatments that make a significant difference for individuals with rare diseases. The product portfolio is primarily focused on treatments in Haemophilia and Speciality Care. Partnering in the development and commercialisation of products in specialty care is a key element of our strategy. Sobi has pioneered in biotechnology with world-class capabilities in protein biochemistry and biologics manufacturing. In 2017, Sobi had total revenues of SEK 6.5 billion and approximately 850 employees. The share (STO:SOBI) is listed on Nasdaq Stockholm. More information is available at www.sobi.com. For more information please contact
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