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
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
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i Canadian Organization for Rare Disorders (CORD).
https://www.raredisorders.ca/about-cord/. Accessed January 18,
2024.
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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.
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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.
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iv Canadian
Organization for Rare Disorders (CORD).
https://www.raredisorders.ca/about-cord/. Accessed January 18,
2024.
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v Global
Genes. (n.d.). RARE Disease Facts. [Online] Available at:
https://globalgenes.org/rare-disease-facts/.
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vi Canadian
Organization for Rare Disorders (CORD).
https://www.raredisorders.ca/about-cord/. Accessed January 18,
2024.
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SOURCE Alexion