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top hemophilia associations in canada: finding the right organization and resources for you
less than 5,000 canadians live with hemophilia. these four organizations aim to improve research and therapies surrounding hemophilia and provide resources for those living with the disease to improve their symptoms and quality of life.
jul 9 2024
4 minute read
hemophilia associations work tirelessly to improve research, advocacy, and care for canadians living with this rare disease.
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hemophilia is a rare disorder that hinders the blood from clotting, leading to increased bleeding after injuries as well as an increased risk for dangerous internal bleeding. the disorder is driven by a lack of specific proteins, or clotting factors, that help platelets (blood cells) form blood clots.
there are four types of hemophilia: a, b, c, and acquired, with types a and b being the most common. roughly 3,900 canadians currently live with hemophilia type a, with 800 living with hemophilia type b.
people living with hemophilia can manage their condition through various therapies, including medications, physical therapy, and transfusions to reintroduce clotting factors back into the body.
however, it can be challenging to cope with the condition alone. these four organizations aim to improve research and therapies surrounding hemophilia and provide resources for those living with the disease to improve their symptoms and quality of life.
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canadian hemophilia society (chs)
301-666 sherbrooke street west
montreal, qc h3a 1e7
514-848-0503
1-800-668-2686 (toll-free)
chs@hemophilia.ca
the canadian hemophilia society is a national voluntary health charity founded in 1953. the society’s primary goal is to help those with hemophilia through patient advocacy efforts, research, resources, and empowerment.
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the chs offers various levels of assistance through its website for those with hemophilia, from providing scholarship programs and career planning to federal and provincial support programs that offer grants and other resources. the organization also provides information for canadians with hemophilia to help them learn more about available therapies.
the chs also has provincial chapters located across the country to make access to their resources easier, as well as partnered up with the world federation of hemophilia (wfh) to bring effective treatment and advanced therapies to those living with hemophilia in underdeveloped countries or areas that lack access to adequate care.
overall, the chs aims to make the lives of those living with hemophilia easier through research, education, advocacy, and improving access to care.
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the association of hemophilia clinic directors of canada (ahcdc)
114 cheyenne way
ottawa, on k2j 0e9
877-968-9449
admin.ahcdc@gallagher.ca
the association of hemophilia clinic directors of canada (ahcdc) is a collaborative organization comprised of hemophilia clinic directors from across the country. the association was enacted in 1994, and since then, it has utilized various methods to help improve the treatment of hemophilia in people with the rare disease.
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the ahcdc meets yearly to discuss its mission of ensuring adequate and viable care for people with hemophilia alongside the canadian hemophilia society. to move forward with its mission, the ahcdc implements three main tactics: clinical services, research, and education.
members of the ahcdc are involved in national and global trials and research studies that work toward creating new factor replacement products to help manage the condition, as well as improve the understanding of the disease and all that it entails.
through research, support, and collaboration with other health organizations, the ahcdc hopes to spread awareness about the rare disease to improve the overall quality of life for canadians living with the disease.
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world federation of hemophilia (wfh)
1425 rené-lévesque boulevard west
bureau 1200
montreal, qc h3g 1t7
514-875-7944
wfh@wfh.org
the world federation of hemophilia (wfh) is a non-profit organization established in 1963 by a canadian businessman, frank schnabel, who was born with a severe form of hemophilia a. when working to start the non-profit, schnabel aimed to improve the efficacy of patient organizations and offer more assistance for those living with bleeding disorders.
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while the wfh started in canada, it has grown to be a global organization geared toward making change on an international level. the organization works with healthcare providers, government bodies, and a global network of national member organizations in 152 countries to aid with identifying, supporting, and treating people living with bleeding disorders. their attention to global advocacy helps achieve the shared common goals for all hemophilia associations worldwide.
their online resources provide easy access to local care centers and organizations in each of the countries involved, giving more people with hemophilia a chance to find supports and clinicians that can help improve their overall quality of life.
through advocacy, humanitarian aid, research and training, and education, the wfh drives further recognition and study into hemophilia to improve patient outcomes.
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canadian organization for rare disorders (cord)
151 bloor street west
suite 600
toronto, on m5s 1s4
416-969-7464
1-877-302-7273
info@raredisorders.ca
the canadian organization for rare disorders (cord) is a national network representing canadians with rare disorders, including hemophilia. cord’s main objective is to improve the lives of those living with rare disorders through education and awareness among policymakers, health professionals, media, and the general population.
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the organization also facilitates other methods for improving the lives of those with rare diseases by implementing new drug strategies, developing and supporting patient community and advocacy, and promoting research.
by creating a strong voice for those with hemophilia and other rare diseases, cord aims to improve all aspects of care through advocacy, research, and education.
living with hemophilia isn’t easy, but in recent decades, those with the disease have been given new options for treatment. because of breakthroughs made in the hemophilia space, largely due to organizations such as the ones mentioned above, the life expectancy for those with the disease is now similar to the general population.
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