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World NMOs - Canadian Hemophilia Society |   |
To kick off the series of portraits of world haemophilia organisations, it is appropriate to start with the Canadian Hemophilia Society (CHS). The CHS was one of the first haemophilia organisations formed anywhere in the world, and it is also one of the best organised.
By David Pouliot (cosmosVIII)
1. What types of disorders does your organisation provide services for?
The Canadian Hemophilia Society (CHS) provides services for people with inherited bleeding disorders, including so people with hemophilia, rare factor deficiencies, von Willebrand disease and platelet disorders.
2. How many members does the organisation have?
It's a difficult thing to determine because the situation in Canada is that people first become members of their province's Chapter, and thus also become members of the CHS. To answer the question I would need to know the number of members of each Chapter, but that I don't have. In the Quebec Chapter (the province from which I come), we have about 200 members. The population of the Quebec province is 7 millions, the whole Canada is about 30 millions. Therefore, if it is not too incorrect to use a triangle rule, I would approximate the number of members of the CHS to 900, but it might be higher that this number.
3. How does the organisation get funding for their activities?
The CHS receives fund from the pharmaceutical companies, from the government, and from its fundraising activities. Also, between each Chapter we have a profit sharing program. This means that every fundraising activity provides money for all other provinces. Right now, the CHS is trying really hard to create a national fundraising event around Canada because we don't have that yet.
To mention something about the chapters fundraising activities: a few of them organize marathon races. Alberta has a casino event which generates lots of fund. The Ontario chapter has a big golf tournament. The Manitoba chapter has a banquet. And the Quebec chapter sells a colouring book. These are a few of the biggest chapters' fundraising events I can recall for the moment.
4. Does the organisation have an office and staff?
The CHS has an office with 10 staffs. I think it's faster to describe the situation if I show the organisation chart rather than to explain each position by words.
Some Chapters also have their own office with staffs. Not one chapter has as much as 10 staffs though. If there is some staff, the number is usually from one to three.
5. Was the organisation established by patients or by doctors?
The CHS was founded by a hemophiliac named Frank Schnabel in 1953 in Montreal. He has succeeded in gathering patients, parents and physicians to form the CHS. Ten years later, it's the same man who founded the World Federation of Hemophilia.
6. Does the organisation play an active role in treatment for people with bleeding disorders?
The role of the CHS in the treatment for people with inherited bleeding disorders is as described by Christian's word: "there is a strict division between the public health service and patient organisations, where the health services is entirely responsible for treatment of the individual patient and the patient organisation can only try to influence the overall policy governing treatment." Nevertheless, indirectly the division is not a strict one in the sense that the CHS has important role in the spreading of educational material to all patients and in the the promoting of comprehensive care to ministers and also to people with inherited bleeding disorders.
7. What kind of treatment is available for people with haemophilia in your country?
In Canada the situation is along a few other fortunate countries. Modern factors concentrates are available to anyone who needs it and they're totally covered by the public health service. Prophylaxis therapy is a current case for a majority of people (with hemophilia), even though some do not have any grave injury or target joint.
8. Is prophylactic treatment available to patients?
The answer is yes. See question #7.
9. Do people with haemophilia have access to a physiotherapist or similar health care professional to help with exercises to strengthen joints or muscles after an injury?
In Canada the expression "comprehensive care" is often used to designed "all of the medical services needed by a hemophiliac and his family for the treatment of hemophilia and related conditions." (Citation from the CHS web site.) At least once a year, mostly during the annual visit to the Treatment center, a examination by a physiotherapist is done. The physiotherapist works very closely with all of the staff of the Treatment center to make sure the hemophiliac receives the most appropriate care.
10. What sorts of activities does your organisation offer for members?
The CHS works closely on developing educational material and tools for all of its chapters or members. I have the name of the major education materials of the CHS which describes them self quite well: Pain Management, Passport to Well-Being, Step by Step program ( for parents of children with inherited bleeding disorder), Emergency Room program. The CHS also provides scholarships, a family week-end for children with inhibitors, and a national awards program to recognize the efforts of our volunteers. Last, but none the less, we have international programs with twinings, though there are not exactly activities intended for our member, they surely benefit to everyone.
Each chapters also has their own activities. These go from family week-end to summer camp.
11. Does the organisation organise skill-building programmes or courses for members?
I am not aware of any official skill-building programs or courses directly intended for our members yet. However, the staffs sometimes participate to such events, and have a national meeting between them each year. Moreover, I know that in our next budgets we will always try to provide a few funds to those who would like to attend sessions or courses to develop skills useful for their volunteer work.
12. Are there any activities specifically for young members (ex. aged 15-30)?
The only program the CHS has for young members yet (because the CHS will soon have a national youth committee) is the scholarship program. On the other hand, on the provincial scale, most of the chapters organize youth camps, but still it is mostly aimed toward youths of under the age of 15. The Ontario Chapter organizes a few activities for youth of age 15-30, like a canoe trip. The Quebec chapter has something smaller: we have a diner together at the restaurant and then go see a Canadian football game. Currently I am not aware of any other activities of the sort in Canada.
13. Try to imagine your organisation in 2011. How do you think it will differ from today?
Not an easy question... I hope that by 2011 the CHS will have find a stable and successful national fundraising event and that the CHS will have more and more international twins.
I chose fundraising because it is something that occupies a lot of our time, and although it's necessary to have fund, it is still only a mean and not an end by itself. So to have no concern for money would implies that we have more time dedicated to other things.
And I chose international aid, because I judge the treatments in Canada to be safe and efficient enough to spend nowadays more time in helping other to achieve the same level as we (and also other countries) have.
NB 1) I'll mention my point here: if anyone from Canada finds errors, please communicate with me or the webmaster to make sure we correct them. Or, as likely, if I missed something I'll be glad to add it if someone points it to me. I answer all the questions to the best I can (without although doing an exhaustive research), and some answers, of course, only represent my personal opinion and maybe not the one of the CHS. Thank you in advance!
NB 2) To help understand the way things are in Canada and without giving too much details I need to shortly explain the structure of the organisation and what are the "chapters". Canada is divided into provinces, each of them has their own Hemophilia organization, and all of them (which names are all of the like "Canadian Hemophilia Society – X chapter", where X is the name of the province) are all related through the same national organization which is the Canadian Hemophilia Society. It is a bit like the reflexion of the politics of our country which is a confederation.
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About the author
David Pouliot lives in Montreal, Canada, where he studies pure and applied mathematics in the Master's programme at the Université de Montréal.
Besides his studies, he is a highly dedicated and active member in the Canadian Hemophilia Society (CHS) both at the national level, as a member of the newly formed Youth Committee, and at the regional level as a member of the executive committee in the Quebec Chapter of the CHS.
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