Alexion Canada Raises Awareness for Rare Diseases Through International colourUp4RARE Campaign

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.

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 (CNW Group/Alexion)

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
Alexion, AstraZeneca Rare Disease, is the group within AstraZeneca focused on rare diseases, created following the 2021 acquisition of Alexion Pharmaceuticals, Inc. As a leader in rare diseases for more than 30 years, Alexion is focused on serving patients and families affected by rare diseases and devastating conditions through the discovery, development and commercialisation of life-changing medicines. Alexion focuses its research efforts on novel molecules and targets in the complement cascade and its development efforts on haematology, nephrology, neurology, metabolic disorders, cardiology, and ophthalmology. Headquartered in Boston, Massachusetts, Alexion has offices around the globe and serves patients in more than 50 countries. Please visit https://alexion.com/worldwide/canada.

AstraZeneca
AstraZeneca (LSE/STO/Nasdaq: AZN) is a global, science-led biopharmaceutical company that focuses on the discovery, development and commercialisation of prescription medicines in Oncology, Rare Diseases, and BioPharmaceuticals, including Cardiovascular, Renal & Metabolism, and Respiratory & Immunology. Based in Cambridge, UK, AstraZeneca operates in over 100 countries, and its innovative medicines are used by millions of patients worldwide. Please visit www.astrazeneca.ca and follow the Company on X @AstraZenecaCA.

Canadian Organization for Rare Disorders (CORD)
CORD is Canada's national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada. For more information, visit www.raredisorders.ca.

Quebec Coalition of Orphan Diseases
RQMO is a non-profit organization whose mission is to inform and educate while providing support to patients suffering from rare and orphan diseases, as well as their families and health professionals through its iRARE center, an information and support center for rare diseases, a unique resource in Canada. The RQMO unites 34 rare disease associations, together with individuals with a rare disease and family members or caregivers of individuals, raises awareness on rare diseases for the general population as well as the medical community and works to advance knowledge and research by facilitating collaboration between patients and researchers.

References

	__________________________________________ i Canadian Organization for Rare Disorders (CORD). https://www.raredisorders.ca/about-cord/. Accessed January 18, 2024.
	ii Haendel, M., Vasilevsky, N., Unni, D., Bologa, C., Harris, N., Rehm, H., Hamosh, A., Baynam, G., Groza, T., McMurry, J., Dawkins, H., Rath, A., Thaxon, C., Bocci, G., Joachimiak, M.P., Köhler, S., Robinson, P.N., Mungall, C. and Oprea, T.I. (2020). How many rare diseases are there? Nature Reviews Drug Discovery, [online] 19(2), pp.77–78. doi: 10.1038/d41573-019-00180-y.
	iii National Organization for Rare Disorders (NORD). New Report Finds Medical Treatments for Rare Diseases Account for Only. 11% of US Drug Spending; Nearly 80% of Orphan Products Treat Rare Diseases Exclusively. https://rarediseases.org/new-report-finds-medical-treatments-for-rare-diseases-account-for-only-11-of-us-drug-spending-nearly-80-of-orphan-products-treat-rare-diseases-exclusively/. Accessed January 18, 2024.
	iv Canadian Organization for Rare Disorders (CORD). https://www.raredisorders.ca/about-cord/. Accessed January 18, 2024.
	v Global Genes. (n.d.). RARE Disease Facts. [Online] Available at: https://globalgenes.org/rare-disease-facts/.
	vi Canadian Organization for Rare Disorders (CORD). https://www.raredisorders.ca/about-cord/. Accessed January 18, 2024.

SOURCE Alexion

Cision

View original content to download multimedia: http://www.newswire.ca/en/releases/archive/February2024/26/c8798.html