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Alexion Canada Raises Awareness for Rare Diseases Through International colourUp4RARE Campaign | ||||||||||||||
By: PR Newswire Association LLC. - 26 Feb 2024 | Back to overview list |
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In recognition of Rare Disease Day on February 29, Alexion welcomes people across the country to join the international colourUp4RARE challenge and learn more about the impact of rare diseases on an estimated three million Canadian families MISSISSAUGA, ON, Feb. 26, 2024 /CNW/ - Alexion Pharma Canada Corp., AstraZeneca's Rare Disease group, is marking Rare Disease Day on February 29 by launching colourUp4RARE. The international campaign aims to raise awareness of how to improve quality of life of people living with rare diseases in Canada, and around the world. Approximately, three million – or one in 12 – Canadians and their families face a debilitating disease that severely impacts their lives.i colourUp4RARE is an opportunity for people across the country and around the world to share their colours by making their mark on a zebra, the long-time symbol for rare diseases, and help bring visibility to rare diseases. From now until March 3, 2024 on www.colourUp4RARE.com, Canadians can colour in the stripes of a digital zebra in the Rare Disease Day colours – blue, green, pink and purple – in support of people living with rare diseases and their families, and to highlight the importance of research for new diagnostic and treatment options. Worldwide, around 7,000 rare diseases are known so far, with more being discovered each year.ii More than 90 per cent of all rare diseases do not have an approved treatment iii and only 60 per cent of approved treatments make it into Canada, up to six years later than in the USA and Europe.iv It takes an average of 4.8 years for people with rare diseases to receive an accurate diagnosis v and one in four children with a rare disease will not live to see their tenth birthday.vi "At Alexion, we stand with patients, families and communities affected by rare diseases," says Gaby Bourbara, Vice President and General Manager, Alexion Canada. "On Rare Disease Day, we are reminded of the strides we have made in understanding and treating rare diseases but recognize there is still much to be done. In 2023, Canada announced its first national rare disease strategy, however, little has been done to alleviate the suffering of millions of patients living with rare diseases and their caregivers. colourUp4RARE is part of our commitment to bringing hope and transformative therapies to those who face the greatest challenges and to advocate on behalf of all rare disease patients in Canada." "Despite their name, rare diseases aren't really that rare – more than 300 million people are living with a rare disease worldwide," says Durhane Wong-Rieger, president and CEO, Canadian Organization for Rare Disorders (CORD). "This campaign creates a unique, rallying moment that raises awareness for those living with rare diseases and their families. CORD and the rare disease community benefit from these initiatives and partners like Alexion as we move to implement the national strategy on rare disease and the Rare Disease Network. We need to call for urgent access to life-altering treatments on behalf of all Canadians living with a rare disease." "When you hear hoofbeats, think of zebras, not horses," adds Jonathan Pratt, Directeur general, Regroupment Québécois des Maladies Orphelines (RQMO). "By coming together across Canada and around the world – united by the image of the zebra – we aim to make rare diseases more visible and drive action to expand access to diagnosis and treatment to improve quality of life." colourUp4RARE is an international, collaborative campaign spearheaded by Alexion and supported by CORD and RQMO on behalf of Canadians affected by rare diseases. To learn more and join the challenge, please visit www.colourUp4RARE.com. Alexion AstraZeneca Canadian Organization for Rare Disorders (CORD) Quebec Coalition of Orphan Diseases References
SOURCE Alexion |
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