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Rendez-vous 2011 | CalgaRy • 3
W e l C o m e
On behalf of the Canadian Hemophilia Society, the Association of Hemophilia Clinic Directors of Canada, the Canadian Association of Nurses in Hemophilia Care, the Canadian Physiotherapists in Hemophilia Care and the Canadian Social Workers in Hemophilia Care, it is my pleasure to welcome you to Rendez-vous 2011 and to Calgary.
The theme for this year’s meeting is New Challenges. The program has been developed to help the CHS and the four health care provider groups who serve the bleeding disorder population address the changing needs of our community. The medical and scientific symposium will focus on three topics that are often overlooked: the care and treatment of
rare inherited bleeding disorders, the health and social challenges of aging with a bleeding disorder, and the very unique challenges of mild hemophilia. This weekend’s program will also provide insights into advances in treatment and research, and allow individuals to learn more about the products manufactured by our pharmaceutical partners.
This conference could not occur without the commitment and support of our industry partners. Their belief in our vision and the value this meeting creates allows us to bring together patients, families and health care providers to share ideas, learn from each other and network. Nor would this meeting be possible without the hours of volunteer time provided by the members of the various organizing committees.
I wish each of you a conference filled with great collaboration, new friendships and fresh perspectives on challenges in the care and treatment of bleeding disorders.
Craig UpshawPresident
Canadian Hemophilia Society
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g e n e R a l i n f o R m a t i o n
n registratiOn The conference registration hours are as follows:
Thursday, May 26 16:00 – 22:00 Friday, May 27 7:00 – 10:00
n badges Your conference badge is your admission ticket to all events with the exception of the
banquet. Please make sure you wear it for all conference functions.
In an effort to be environmentally conscious and to reduce future costs, we would kindly ask that you return your badge in the foyer of the Ballroom before you leave the hotel; the badges will be recuperated for a later CHS conference.
n MeaLs and COFFee breaKs Your conference registration includes all continental breakfasts, coffee breaks and lunches.
n siMULtaneOUs transLatiOn Translation service will only be available during the medical and scientific symposium.
Please make sure to return your audio receiver before you leave on Friday afternoon. You will be billed for any unreturned receiver at the $400 replacement cost.
n eXHibitiOn HaLL The Rendez-vous 2011 exhibition hall is located on the Second Floor in the Garden Patio Room.
Conference exhibitors represent companies that provide products and information to people with inherited bleeding disorders. The Rendez-vous exhibition hall hours are as follows:
Thursday, May 26 18:00 – 21:00
Friday, May 27 8:00 – 9:00 10:45 – 11:00 12:00 – 13:00 15:00 – 15:15 17:30 – 18:30
n COnFerenCe eXHibitOrs Baxter Novo Nordisk Bayer Octapharma Biogen Idec Hemophilia Pfizer CSL Behring
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f l o o R p l a n
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PUBLIC CONCOURSE
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SALON C
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8 • Rendez-vous 2011 | CalgaRy
s C h e d u l e o f e v e n t s
THURSDAY, MAY 26, 2011 ROOMS
9:00 – 17:00 CANHC Annual Meeting Ballroom Salon A
9:00 – 17:00 Canadian Pediatric Thrombosis and Hemostasis Network The Den
10:00 - 18:00 Exhibit set-up Garden Patio
FRIDAY, MAY 27, 2011
7:00 – 8:30 Breakfast and satellite symposium hosted by BAYER Ballroom Salons A-B Insider information: Intra-articular perils, pitfalls and possibilities. (breakfast served at 6:45)
7:30 – 9:00 Breakfast (other participants) in exhibit area Garden Patio
9:00 – 17:30 Medical and scientific symposium Ballroom New challenges in the care of people with inherited bleeding disorders 12:00 – 13:00 Lunch (all participants) in exhibit area Garden Patio
17:30 – 18:30 Reception (all participants) in exhibit area Garden Patio
18:30 – 22:00 AHCDC dinner meeting Ballroom Salons A-B
19:00 – 20:00 CHS Board orientation session Clearwater
19:30 - 21:00 CHS Governance Committee meeting Kananaskis
SATURDAY, MAY 28, 2011
7:15 – 8:15 Breakfast and satellite symposium hosted by PFIzER Ballroom Salons A-B A new age in hemophilia: Managing co-morbidities (breakfast served at 6:45)
7:30 – 8:30 Breakfast (other participants) Ballroom Salon C
8:30 – 9:30 CHS Annual General Meeting Ballroom Salons A-B
8:30 – 17:00 CSWHC Annual Meeting Olympic
8:30 – 17:00 CPHC Annual Meeting The Den
8:30 – 16:00 AHCDC Scientific and Educational Meeting Garden Patio
Presented by
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SATURDAY, MAY 28, 2011 (continued)
9:45 – 12:00 Workshop: Implementation of the CHS strategic plan Ballroom Salons A-B
9:45 – 17:00 Youth Committee event: Drive Your Car/Drive Your Care Red Deer
12:00 – 13:00 Lunch
12:15 - 13:00 International partnerships information session Clearwater
13:00 – 17:00 CHS Board of Directors’ meeting Ballroom Salon C
13:00 – 17:00 Focus group: Aging with a bleeding disorder Clearwater/Kananaskis
16:00 – 17:00 AHCDC business meeting (for AHCDC members only) Garden Patio
19:00 Banquet and CHS National Awards Ballroom
SUNDAY, MAY 29, 2011
8:00 - 12:30 Meeting: Women with bleeding disorders working group Olympic
8:30 – 12:00 CPHC Annual Meeting The Den
9:00 – 12:00 CHS Board of Directors’ meeting Ballroom
10 • Rendez-vous 2011 | CalgaRy
medical and scientific symposium 2011new challenges in the care of people with inherited bleeding disorders
Friday, May 27, 2011 | Calgary, Alberta
Organizing CommitteeMadeleine Borden, CSWHC | Morna Brown, CANHC | Nancy Dower, AHCDC
Nicole Graham, CPHC | Shannon Jackson, AHCDC | David Page, CHS | Man-Chiu Poon, AHCDC Bruce Ritchie, CHS | MacGregor Steele, AHCDC | Pam Wilton, CHS
WELCOME AND OPENING REMARkS
9:00 – 9:15 Dr. Anthony k. C. Chan, McMaster University, president, Association of Hemophilia Clinic Directors of Canada Craig Upshaw, president, Canadian Hemophilia Society Dr. Serge-Simon Leclerc, medical/scientific advisor, Bayer François Boulerice, Ph.D., associate director, Medical Affairs, Specialty Care Business Unit, Pfizer
SESSION 1 AGING
Moderators: Dr. Shannon Jackson, St. Paul’s Hospital, Vancouver; Pam Wilton, RN, past president, Canadian Hemophilia Society
9:15 – 10:15 The ageing haemophilic population: a major success and a major challenge Dr. Gerard Dolan, director, Nottingham Comprehensive Care Centre for Haemophilia, consultant haematologist, Nottingham University Hospitals, U.K.
10:15 – 10:45 When you only have 100 years to live: A Canadian perspective on aging Dr. karen Fruetel, associate professor, Faculty of Medicine, University of Calgary
11:00 – 11:20 Collective patient perspective: Findings of B.C. focus group on aging in hemophilia Dr. Neale Smith and Dr. Shannon Jackson, St. Paul’s Hospital, Vancouver
11:20 – 12:00 Panel discussion: Moving forward with further knowledge and research Moderators: Dr. Shannon Jackson, St. Paul’s Hospital, Vancouver; Pam Wilton, RN, past president, Canadian Hemophilia Society
SESSION 2 RARE INHERITED BLEEDING DISORDERS
Moderators: Dr. Man-Chiu Poon, University of Calgary and the Southern Alberta Rare Blood and Bleeding Disorders Comprehensive Care Program, Calgary; Morna Brown, RN, Southern Alberta Rare Blood and Bleeding Disorders Comprehensive Care Program, Calgary
13:00 – 13:25 Current status of rare bleeding disorders in Canada Dr. Margaret Rand, University of Toronto and Bleeding Disorders Comprehensive Care Program, Hospital for Sick Children, Toronto; Dr. John k. M. Wu, University of British Columbia, Vancouver
13:25 – 13:50 Rare platelet disorders: Management of Glanzmann Thrombasthenia Dr. Man-Chiu Poon, University of Calgary and the Southern Alberta Rare Blood and Bleeding Disorders Comprehensive Care Program, Calgary
13:50 – 14:15 Rare coagulation disorders - Treatment of FVII deficiency: Do we know what we are doing? Dr. Georges-Étienne Rivard, CHU Sainte-Justine, Montreal
14:15 – 15:00 Panel discussion: Living with rare bleeding disorders Moderator: Nora Schwetz, RN, Manitoba Bleeding Disorders Program, Winnipeg
SESSION 3 MILD HEMOPHILIA
Moderators: Nicole Graham, PT, Sudbury and North-Eastern Ontario Hemophilia Program; Dr. Nancy Dower, Dr. John Akabutu Comprehensive Centre for Bleeding Disorders, University of Alberta Hospital, Edmonton
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15:15 – 15:25 Introduction to mild hemophilia Dr. Dawn Goodyear, Southern Alberta Rare Blood and Bleeding Disorders Comprehensive Care Program, Calgary
15:25 – 15:45 Attitudes and behaviours - the mild hemophilia experience: the CPHC project JoAnn Nilson, PT, Saskatchewan Bleeding Disorders Program, Saskatoon
15:45 – 16:00 Mining mild hemophilia: Suggestions for a meaningful dialogue with PWMH. They know more than we might think! Marion Hahn, PT, Montreal Children’s Hospital
16:00 – 16:15 Is it a bleed, or should I just walk it off? It’s not always so easy to tell the difference! A self–assessment tool to help PWMH assess their bleeds and know when they need help. kathy Mulder, PT, Bleeding Disorders Program, Health Sciences Centre, Winnipeg
16:15 – 16:30 Physical activity and sports: It’s a guy thing. Carolyn Jarock, PT, IWK Health Centre, Halifax
16:30 – 17:15 Panel discussion: Living with mild hemophilia: What’s the big deal? Moderator: Greig Blamey, PT, Bleeding Disorders Program, Health Sciences Centre, Winnipeg
CLOSING REMARkS
17:15 – 17:30 Dr. Anthony k. C. Chan, McMaster University, president, Association of Hemophilia Clinic Directors of Canada Craig Upshaw, president, Canadian Hemophilia Society
17:30 – 18:30 Symposium reception
12 • Rendez-vous 2011 | CalgaRy
Saturday, May 28, 2011Delta Bow Valley Hotel | Calgary, Alberta
8:30 – 9:30 Ballroom
We will open the meeting by observing a moment of silence in memory of those from our community who have passed away over the years.
1. President’s opening remarks
2. To approve the minutes of the 2010 AGM
3. To receive the report of the Nominating Committee
4. To acknowledge the designated directors of each chapter
5. To nominate candidates for the director- at-large positions on the CHS Board for 2011-2012
6. To receive the audited financial statements of the Canadian Hemophilia Society for the year ended December 31, 2010
7. To appoint an auditor for the ensuing year
8. To receive the report of the Hemophilia Research Million Dollar Club
9. Presentations from Baxter and Bayer
10. To transact such other business as may properly come before this Annual General Meeting of the members of the Canadian Hemophilia Society
Canadian hemophilia soCiety2011 annUaL generaL Meeting
Rendez-vous 2011 | CalgaRy • 13
Since 1990, the Hemophilia Research Million Dollar Club has funded more than 60 research projects, supported 50 Canadian researchers and invested close to three million dollars to improve treatment and to find a cure for inherited bleeding disorders.
You can help the Million Dollar Club make a difference by investing in research. Special pledge forms will be available at the Saturday night banquet.
Thank you For sharing The dreaM oF a cure.
YOU HAVE A RESEARCH PROJECT IN MIND?The CHS counts on the dedicated work of researchers to accomplish its mission to improve the health and quality of life of all people with an inherited bleeding disorder and ultimately to find a cure.
Join us in this effort… keep your eyes open for the next Call for applications coming up in August!
14 • Rendez-vous 2011 | CalgaRy
a C k n o W l e d g e m e n t s
The Canadian Hemophilia Society would like to thank the following partners for their commitment, support and invaluable contributions. We extend our gratitude and a heartfelt thank you for their sponsorship of Rendez-vous 2011.
Presenting sPOnsOrs
CHaMPiOn sPOnsOrs
sUPPOrting sPOnsOrs
sPOnsOr
Héma-Québec
