Celebrating YEARS 2013 ANNUAL REPORT

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Virgil Lyons
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1 Celebrating YEARS 2013 ANNUAL REPORT

In hospital Early 1950s to mid 1960s Transfusions of fresh frozen plasma and, for many, one week out of four tied to a HOSPITAL bed.

care and treatment made Home care Out-patient clinic Mid 1960s to mid 1970s A period of optimism.

When a person had a bleed, he went to the OUT- PATIENT CLINIC and two hours later he was back home!

Freedom at last! Sadly the products were often contaminated with HIV and hepatitis C. We will always remember this as the era of Canada s tainted blood tragedy.

2 In hospital Early 1950s to mid 1960s Transfusions of fresh frozen plasma and, for many, one week out of four tied to a HOSPITAL bed. FRANK SCHNABEL CHS FOUNDER Looking back at the 60th anniversary of the Canadian Hemophilia Society, it seems appropriate to present an overview of the progress in care and treatment made Home care Out-patient clinic Mid 1960s to mid 1970s A period of optimism. More effective forms of treatment were discovered, ending the long and grueling time in hospital. When a person had a bleed, he went to the OUT- PATIENT CLINIC and two hours later he was back home! What a change from the 5- to 7-day stay at the hospital for treating each bleeding episode. Mid 1970s to late 1980s Treatments could now be administered at HOME. Freedom at last! Sadly the products were often contaminated with HIV and hepatitis C. We will always remember this as the era of Canada s tainted blood tragedy. possible by research over the years Self-infusion 1990s to now Treatments products were made safe and prophylaxis was introduced. Parents are now infusing their children up to three times a week to prevent bleeds. This made life so much easier for families. Today, children as young as seven years old go to summer camp where they learn to self-infuse. What an impressive development! 2

3 Our mission The Canadian Hemophilia Society is committed to improve the health and quality of life of all people with inherited bleeding disorders and ultimately to find a cure. Our vision A world free from the pain and suffering of inherited bleeding disorders. 3

In 1953, a young man with severe hemophilia named Frank Schnabel, pictured on the cover of this annual report, and his physician, founded the Canadian Hemophilia Society with the goals of raising

4 In 1953, a young man with severe hemophilia named Frank Schnabel, pictured on the cover of this annual report, and his physician, founded the Canadian Hemophilia Society with the goals of raising awareness about inherited bleeding disorders, improving care and ultimately finding a cure. As the CHS 60th anniversary year ends, we can say with confidence that incredible progress has been made to reaching those goals. A secure supply of safe blood products and their recombinant alternatives is available to treat all types of inherited bleeding disorders. A number of innovative clotting factor concentrates are in late-stage clinical trials to treat hemophilia A and B, and von Willebrand disease. When approved for use, they will offer new ways to improve care and quality of life. A gene therapy treatment is in early-stage clinical trials. For the first time, we can truly say that a cure is just over the horizon. The CHS has long been a proponent of access to the safest and most effective treatment products for people with inherited bleeding disorders. This focus goes back to the 1970s and lasted throughout the horrific period of HIV and hepatitis contamination of the blood supply in the 1980s and the ensuing Royal Commission of Inquiry on the Blood System in Canada in the 1990s, which resulted in significant reforms. The CHS advocacy and vigilance were recognized in 2013 when Canadian Blood Services (CBS) awarded the CHS a Lifetime Achievement Award for its prominent role in working to promote a safe and secure supply of blood and blood products for all Canadians. The CHS has continued the tradition, started 60 years ago, of close collaboration between patients and their families, and the health care providers in Canada s network of bleeding disorder treatment centres. While care and treatment have improved immensely over time, we live in an era of health funding constraints. With the goal of maintaining and even improving care, the CHS in 2013 began an assessment of the human and physical resources in the network of treatment centres across the country. It is our firm belief that strong 4

The CHS is committed to supporting the health care providers who are so important to our community. Another pillar of our mission is research.

5 well-supported multidisciplinary teams provide quality care, and moreover that this quality care is cost-effective in the long term. Today, people with inherited bleeding disorders who receive optimal care can live long lives and be fully productive members of society. The CHS is committed to supporting the health care providers who are so important to our community. Another pillar of our mission is research. Since 1989 the CHS has been investing in basic and clinical research to improve care and contribute to finding a cure. In 2013, the CHS added new research programs to promote knowledge acquisition and exchange in the fields of nursing, physiotherapy and social work. While we are justifiably proud of what we have achieved at home, we are painfully aware that progress in the care and treatment of inherited bleeding disorders has not reached all corners of the globe. For example, close to three-quarters of world citizens with hemophilia A and B receive little or no care, and die at a young age after hard, pain-filled lives. The CHS is a strong supporter of the work of the World Federation of Hemophilia (WFH) whose vision is Treatment for All. In 2013, after a dozen years of work, the CHS, CBS and WFH were able to announce the success of Project Recovery, whereby surplus blood components from Canadian donors are transformed into factor VIII concentrates to be supplied, free of charge, to patients in the developing world through WFH s Humanitarian Aid Program. It is estimated that Project Recovery will provide enough factor VIII to treat 5,000 to 10,000 painful, debilitating joint hemorrhages each year. This is a world first and will serve as a model for other countries. In 2013, the CHS began a twinning partnership with the Hemophilia Society of Bangladesh with the goal of helping the Bangladeshis build their organizational capacity and become more effective advocates for their members. Meanwhile our Quebec Chapter continues its twinning relationship with the Nicaraguan Hemophilia Association, and our Ontario Chapter has embarked on a new twinning partnership with the Tanzanian Hemophilia Society. Finally, we would like to thank all our volunteers whose hard work makes these achievements a reality, and our generous donors, large and small, without whom we would not exist. Craig Upshaw, president David Page, national executive director 5

6 60 years of dedication from volunteers and staff In 2013, the CHS could count on the help of its 300 active volunteers and 20 staff across the country Founded in 1953, the Canadian Hemophilia Society (CHS) is a national voluntary health charity. The CHS is affiliated with the World Federation of Hemophilia, which is officially recognized by the World Health Organization. The CHS works in collaboration with health care specialists in Canada s 26 bleeding disorder treatment centres, the blood system operators (Canadian Blood Services and Héma-Québec), the Network of Rare Blood Disorder Organizations, the hepatitis C community, the AIDS community, and others who share our common interests. 6

For 60 years, the CHS has been committed to helping the one in 100 Canadians carrying the gene of an inherited bleeding disorder More than 35,000 of them have symptoms severe enough to require

7 For 60 years, the CHS has been committed to helping the one in 100 Canadians carrying the gene of an inherited bleeding disorder More than 35,000 of them have symptoms severe enough to require medical care. Yet many have not been properly diagnosed. There are no cures for inherited bleeding disorders. They are lifelong conditions. Effective treatment is available for those diagnosed. Left untreated, however, bleeding disorders are life-threatening. Blood products, their recombinant substitutes and other drugs are effective in treating people with bleeding disorders, but they are not a cure. The Canadian Hemophilia Society is active in ensuring the safety of the blood supply in Canada through constant vigilance and monitoring for all Canadians. The inherited bleeding disorders are: hemophilia A and B von Willebrand disease rare factor deficiencies platelet function disorders To learn more about inherited bleeding disorders, please go to 7

60 years of high quality services offered to people with inherited bleeding disorders The quantity and quality of services offered by the CHS would not be possible without our invaluable partnerships.

8 60 years of high quality services offered to people with inherited bleeding disorders The quantity and quality of services offered by the CHS would not be possible without our invaluable partnerships. Over the past 60 years, the CHS has teamed up with the health care professionals at the comprehensive care clinics, generous partners in the pharmaceutical industry, corporate and individual donors and volunteers to achieve its goals in: Care and treatment Support and education Awareness Research Safe and secure blood supply 8

9 Care and treatment ACHIEVE OPTIMAL COMPREHENSIVE CARE FOR ALL PEOPLE WITH INHERITED BLEEDING DISORDERS. The CHS has worked with determination for 60 years to build and maintain a network of treatment centres for bleeding disorders serving people in every province. Proper care and treatment for people with inherited bleeding disorders would not be possible without the expertise of a multidisciplinary team of health care professionals: physicians, nurses, physiotherapists, social workers and other specialists, such as psychologists and gynaecologists. In 2013: We hosted Rendez-vous 2013, a medical and scientific symposium which included sessions on medical and psychosocial perspectives, providing physicians, other health care providers and patients with the most recent knowledge on care and treatment of inherited bleeding disorders. From left to right: Christine Keilback, Dr. Rivard, David Page, Dr. Carcao and Dr. Iorio participating in the debate Less frequent infusions or higher trough levels? at Rendez-vous We supported annual meetings of the physiotherapists, nurses and social workers associated with the 26 bleeding disorder treatment centres across Canada to help maintain standards of care across the country and to keep the medical community abreast of state-of-the-art developments in the care and treatment of people with bleeding disorders. We developed a centre assessment procedure supported by the Association of Hemophilia Clinic Directors of Canada to optimize care for patients treated in the Canadian bleeding disorder treatment centres. Questionnaires were mailed to patients from each participating centre and interviews with comprehensive care team staff were conducted in several provinces; more clinics will be visited in It was a special honour to host Rendez-vous 2013 in the year that the CHS celebrated 60 years of service to the inherited bleeding disorder community. CHRISTINE KEILBACK, EXECUTIVE DIRECTOR OF THE CHS MANITOBA CHAPTER. 9

ARCH 2013 VOLUME 48 NO 1 2013 VOLUME 48 NO 2 2013 VOLUME 48 NO 3 C A N A D I A N H E M O P H I L I A S O C I E T Y Hem philia Canadian Hemophilia Society Today M Serving the Bleeding Disorder

Hemophilia BLEEDING A BANDAGE Society IS NOT ENOUGH COM MEMORATION OF THE TAINTED BLOOD TRAGEDY COMPREHENSIVE CARE STANDARDS HEPATITIS C AND HIV COMPENSATION NATIONAL YOUTH COMMITTEE FAMILY IN

THE FIFTH VITAL SIGN WORLD HEMOPHILIA DAY AGEING PROGRAM CARE UNTIL CURE HEMOSTASIS FELLOWSHIP NATIONAL VOLUNTEER AWARDS REPORT CARDS ON CANADA S BLOOD SYSTEM JUST THE GUYS PASSPORT TO WELL-BEING

10 ARCH 2013 VOLUME 48 NO VOLUME 48 NO VOLUME 48 NO 3 C A N A D I A N H E M O P H I L I A S O C I E T Y Hem philia Canadian Hemophilia Society Today M Serving the Bleeding Disorder Community PASSPORT TO WELL-BEING FACTORFIRST CODEROUGE STEP BY STEP SCHOLAR SHIPS HEMOPHILIA RESEARCH MILLION DOLLAR CLUB TWINNING DREAM OF A CURE RESEARCH The PROGRAM Canadian HELP STOP THE Hemophilia BLEEDING A BANDAGE Society IS NOT ENOUGH COM MEMORATION OF THE TAINTED BLOOD TRAGEDY COMPREHENSIVE CARE STANDARDS HEPATITIS C AND HIV COMPENSATION NATIONAL YOUTH COMMITTEE FAMILY IN HIBITOR WEEKENDS VWD AWARENESS CAMPAIGN PARENTS EMPOWERING PARENTS RED WHITE & YOU RENDEZ-VOUS RARE FACTOR DEFICIENCY BOOKLETS ALL ABOUT celebrating HEMOPHILIA ALL ABOUT CARRIERS SUMMER CAMPS PAIN THE FIFTH VITAL SIGN WORLD HEMOPHILIA DAY AGEING PROGRAM CARE UNTIL CURE HEMOSTASIS FELLOWSHIP NATIONAL VOLUNTEER AWARDS REPORT CARDS ON CANADA S BLOOD SYSTEM JUST THE GUYS PASSPORT TO WELL-BEING FACTORFIRST CODEROUGE STEP BY STEP SCHOLARSHIPS HEMOPHILIA RESEARCH MILLION DOLLAR CLUB TWINNING DREAM OF A CURE RESEARCH PROGRAM HELP STOP THE BLEEDING A BANDAGE IS NOT ENOUGH COMMEMORATION OF THE TAINTED BLOOD TRAGEDY COMPREHENSIVE CARE STANDARDS HEPATITIS C AND HIV COMPENSATION NA TIONAL YOUTH COMMITTEE FAMILY INHIBITOR WEEKENDS VWD AWARENESS CAM PAIGN PARENTS EMPOWERING PARENTS RED WHITE & YOU RENDEZ-VOUS RARE FACTOR DEFICIENCY BOOKLETS ALL ABOUT HEMOPHILIA ALL ABOUT CARRIERS SUMMER CAMPS PAIN THE FIFTH VITAL SIGN WORLD HEMOPHILIA DAY AGEING PROGRAM CARE UNTIL CURE HEMOSTASIS FELLOWSHIP Y E A NATIONAL R S VOLUNTEER AWARDS REPORT CARDS ON CANADA S BLOOD SYSTEM JUST THE GUYS DAY AGE ING PROGRAM CARE UNTIL CURE HEMOSTASIS FELLOWSHIP NATIONAL VOLUN TEER AWARDS REPORT CARDS ON CANADA S BLOOD SYSTEM JUST THE GUYS PASSPORT TO WELL-BEING FACTORFIRST CODEROUGE STEP BY STEP SCHOLAR SHIPS HEMOPHILIA RESEARCH MILLION DOLLAR CLUB TWINNING DREAM OF A CURE RESEARCH PROGRAM HELP STOP THE BLEEDING A BANDAGE IS NOT ENOUGH COM MEMORATION OF THE TAINTED BLOOD TRAGEDY COMPREHENSIVE CARE STANDARDS HEPATITIS C AND HIV COMPENSATION NATIONAL YOUTH COMMITTEE FAMILY IN HIBITOR WEEKENDS VWD AWARENESS CAMPAIGN PARENTS EMPOWERING PARENTS RED WHITE & YOU RENDEZ-VOUS RARE FACTOR DEFICIENCY BOOKLETS ALL ABOUT HEMOPHILIA ALL ABOUT CARRIERS SUMMER CAMPS PAIN THE FIFTH VITAL SIGN WORLD HEMOPHILIA DAY AGEING PROGRAM CARE UNTIL CURE HEMOSTASIS Hem philia Canadian Hemophilia Society Today AUGUST Serving the Bleeding Disorder Community A show of hands at Rendez-vous 2013 in Winnipeg Support and education PROVIDE EFFECTIVE DELIVERY OF INFORMATION AND SUPPORT TO PATIENTS AND THEIR FAMILIES ACROSS CANADA IN BOTH ENGLISH AND FRENCH. In 60 years, the CHS has produced an impressive number of publications and videos that have been repeatedly praised within and outside Canadian borders. Life-changing workshops and educational meetings organized by the CHS have also marked the past six decades. In 2013: We distributed three issues of our newsmagazine Hemophilia Today to keep the bleeding disorder community well informed. Hem philia Canadian Hemophilia Society Today NOVEMBER Serving the Bleeding Disorder Community Congratulations THE CANADIAN HEMOPHILIA SOCIETY RECEIVES THE CANADIAN BLOOD SERVICES 2013 LIFETIME ACHIEVEMENT AWARD Parents Empowering Parents (PEP) workshops were delivered in Manitoba, Alberta and Nova Scotia in collaboration with trained PEP leaders to increase skills and knowledge of parents raising a child with a bleeding disorder and to encourage peer support among families with children newly diagnosed. The CHS James Kreppner Memorial Scholarship and Bursary Program granted four $5,000 awards: two scholarships based on academic merit, one bursary based on financial need and one mature student bursary to increase the number of people affected by bleeding disorders pursuing post-secondary education and vocational training. ALSO: PROJECT RECOVERY, a world-first initiative advanced by the Canadian Hemophilia Society becomes reality My own experiences with hemophilia and the great losses that my family and I have endured due to the tainted blood tragedy have given me the abilities and strengths needed to become a good social worker and to ultimately assist in creating a bright and healthy future for our very own hemophilia community. A RECIPIENT OF A CHS JAMES KREPPNER MEMORIAL SCHOLARSHIP 10

11 Awareness RAISE AWARENESS AMONG PEOPLE WITH INHERITED BLEEDING DISORDERS, THEIR IMMEDIATE COMMUNITIES AND HEALTH CARE PROVIDERS. For 60 years, the CHS and its chapters have spared no effort in raising awareness in the general population and with health care providers who may come into contact with people with inherited bleeding disorders. Displaying creativity and trying a variety of activities have been customary: golf tournaments, family walks, polar bear dips, Swim for Bleeders, Mall in the Hall, Dance for Life, Culinary Gala Dinner, and many more. In 2013: In April, World Hemophilia Day was once again a great occasion to raise public awareness. Activities were held across the country to reach out and educate people potentially suffering from a bleeding disorder. On this special occasion, the CN Tower in Toronto was lit up in red. A large number of awareness activities were organized by CODErouge ambassadors across the country. Among other activities, we would like to highlight the presence of CODErouge booths at two different Alberta Woman s Shows reaching 3,000 women and at the Prince Edward Island Marathon reaching 3,000 attendees (participants, families and friends). 11

12 Research PROMOTE AND FUND RESEARCH TO IMPROVE TREATMENT AND ULTIMATELY TO FIND A CURE. The CHS provides clinical and research fellowships and funds to leading Canadian researchers working in the field of bleeding disorders. The CHS has an unconditional commitment towards research. Because research means the world to our community. Because research means hope. Hope for a better quality of life. And hope for a cure. Over the past 23 years, thanks to the Hemophilia Research Million Dollar Club endowment, generous individual donors, committed corporate sponsors and CHS chapters and regions across the country, the CHS has invested close to seven million dollars in research in Canada. In 2013, the CHS funded eight research projects through four different research programs: The CHS Dream of a Cure Research Program The CHS/Pfizer Care until Cure Research Program The CHS/Association of Hemophilia Clinic Directors of Canada/CSL Behring Hemostasis Fellowship Program The CHS/Baxter Canada Inherited Bleeding Disorders Fellowship Program for Nurses and Allied Health Care Professionals Detailed descriptions of the funded research projects are available at I am optimistic that my project will provide better understanding of what causes Type 3 von Willebrand disease and may help create personal treatment options for patients. MACKENZIE BOWMAN, PH.D., QUEEN S UNIVERSITY, KINGSTON, ONTARIO 12

Safe and secure blood supply ADVOCATE FOR ACCESS TO A SECURE SUPPLY OF THE SAFEST AND MOST EFFICACIOUS THERAPIES FOR TREATMENT OF INHERITED BLEEDING DISORDERS.

In 2007, the CHS launched a program to commemorate the tainted blood tragedy... lest we forget. As part of this initiative, commemorative Trees of Life have been planted each year since.

13 Safe and secure blood supply ADVOCATE FOR ACCESS TO A SECURE SUPPLY OF THE SAFEST AND MOST EFFICACIOUS THERAPIES FOR TREATMENT OF INHERITED BLEEDING DISORDERS. The CHS is the leading patient organization in Canada to independently monitor the safety and supply of blood and blood products within the Canadian blood system. In 2007, the CHS launched a program to commemorate the tainted blood tragedy... lest we forget. As part of this initiative, commemorative Trees of Life have been planted each year since. Commemoration of thetainted Blood Tragedy In 2013: To ensure all Canadians have access to safe blood products in adequate supply, we continued to provide the voice of recipients on Health Canada, Canadian Blood Services (CBS), Héma-Québec and provincial government blood advisory committees. To top off an unforgettable 60th anniversary year, the CHS was presented with the Lifetime Achievement Award from Canadian Blood Services for its prominent role in working to promote a safe and secure supply of blood and blood products for all Canadians. The CHS continues to ensure that matters of safety and supply are at the forefront of our decisionmaking. Its constant vigilance, focus on safety, and commitment to ensuring Canada s blood tragedy is never forgotten, has helped define the way Canadian Blood Services operates. - EXCERPT FROM CBS STATEMENT WHEN PRESENTING THE AWARD TO THE CHS 13

14 Future leaders We often tend to overlook mental health conditions but I am pleased they were addressed during our workshop. I learned that it is important to be aware of the mental health issues associated with having a bleeding disorder and the ways one can learn to cope with them. Youth are the future of any organization. After 60 years of existence, the CHS has recognized the value of past experience coupled with the importance of subsequent leadership. This is why we strive to engage the young members of our community to join in and participate in the vital growth and development of our community and ultimately to ensure the sustainability of the organization. In 2013, this promising group participed in a leadership workshop which provided them with tips to increase their leadership skills, learn how to step outside of their comfort zone when dealing with mental and emotional health issues and highlight the importance of taking ownership of their bleeding disorder. A YOUTH WHO ATTENDED THE 2013 CHS YOUTH WORKSHOP 14

15 International commitment Canada s role at the international level is invaluable. The CHS, its provincial chapters and Canadian hemophilia treatment centres are world leaders in twinning projects, having participated in 14 twinning partnerships over the last decade. By linking emerging and established hemophilia organizations and treatment centres, the Twinning Program has tremendously improved treatment and care for people with hemophilia around the world and the CHS is proud to have been instrumental in that success. But, in 2013, the Canadian Hemophilia Society had an additional impact worldwide. The CHS is at the origin of a humanitarian aid project called Project Recovery. This project turns unused blood products from Canadian Blood Services donors into hemophilia medicine for developing countries. It will be channeled through the World Federation of Hemophilia (WFH) Humanitarian Aid Program and will allow the annual treatment of approximately 5,000 joint hemorrhages, the most common symptom of hemophilia, in children and adults. Without such treatments, the people experiencing these hemorrhages would endure weeks of excruciating pain and, over time, serious joint damage leading to crippling. This is precisely what the Canadian hemophilia community had to go through 60 years ago when the CHS was founded and before advances in care and treatment made its mark on our community. 15

16 60 years with the best volunteers! The CHS relies entirely on a remarkable group of dedicated volunteers. These volunteers are exceptional people who give countless hours to the success of events and programs. In addition, our chapters do extraordinary work reaching out to the bleeding disorder community. They organize local activities, operate children s summer camps, keep members informed through newsletters and coordinate numerous and creative fundraising events CHAPTER PRESIDENTS 2013 EXECUTIVE COMMITTEE Curtis Brandell British Columbia Jennifer Ruklic Sheri Spady Alberta Wendy Quinn Saskatchewan John Rogasky Manitoba Paul Wilton Ontario François Laroche Quebec Brent Buchanan Rachelle Kingsler (as of September 2013) New Brunswick Shelley Mountain Prince Edward Island Dianna Cunning Nova Scotia Jeffrey Jerrett Newfoundland and Labrador Craig Upshaw President Pam Wilton, RN Past-President Kathy Lawday Vice-President Paul Wilton Vice-President Mylene D Fana Secretary Dan Doran Treasurer 16

2013 BOARD OF DIRECTORS (From top to bottom): Jeffrey Jerrett, John Rogasky, David Page (executive director), Bruce Rempel, Tara Curwin (for Brent Buchanan), Justin Smrz (youth representative),

17 2013 BOARD OF DIRECTORS (From top to bottom): Jeffrey Jerrett, John Rogasky, David Page (executive director), Bruce Rempel, Tara Curwin (for Brent Buchanan), Justin Smrz (youth representative), Shelley Mountain, Jennifer Ruklic, Mylene D Fana, Wendy Quinn, Kathy Lawday, Pam Wilton, Craig Upshaw, Dan Doran, Paul Wilton. Missing from the photo: Dianna Cunning and Dr. Alfonso Iorio (medical advisor). 17

18 Corporate philanthropy program We would like to thank the following companies, corporate foundations and employee fund programs for their generous support. Our way of recognizing them for their generosity is through our Corporate Philanthropy Program which acknowledges the cumulative support given to the CHS for core programming needs and program sponsorship. SAPPHIRE PLATINUM GOLD Baxter Novo Nordisk BRONZE Biogen Idec Hemophilia Leon s Octapharma Opinion Health Shoppers Drug Mart We would also like to thank numerous additional donors individuals, corporations and foundations who each year express their confidence in us by making substantial supporting donations. Working together with individuals and the corporate sector in Canada helps the CHS accomplish its mission and vision by extending our reach and reinforcing our messages. 18

19 T h e B e n e FA C T O R s C lub Corporations that make annual gifts of $10,000 or more to the core programs of our organization are recognized as members of the BeneFACTORs Club. The Canadian Hemophilia Society recognizes their tremendous investment. Visionary Innovators Builder Believers Bayer CSL Behring Novo Nordisk Pfizer Baxter Biogen Idec Hemophilia Octapharma Partnerships The CHS is fortunate to be surrounded by remarkable partners helping us to fulfill our mission. Association of Hemophilia Clinic Directors of Canada (AHCDC) Canadian Association of Nurses in Hemophilia Care (CANHC) Canadian Physiotherapists in Hemophilia Care (CPHC) Canadian Social Workers in Hemophilia Care (CSWHC) World Federation of Hemophilia (WFH) The Canadian Hemophilia Society is proud to be a member of HealthPartners. HealthPartners is a unique collaboration of 16 of Canada s best known national health charities, raising funds exclusively through workplace charitable giving programs. These charities provide services to Canadians in all regions of our country Member organizations share two primary goals: Research: Supporting medical research toward improved treatment and ultimately a cure for debilitating diseases. Programs: Sponsoring education as well as prevention efforts and services that assist Canadians living with disease. 19

20 Canadian Hemophilia Society Balance Sheet As at December 31, Assets ProPerty AnD research FunD- endowment FunD- GenerAl equipment ContinGenCieS million million FunD FunD FunD DollAr Club DollAr Club total total $ $ $ $ $ $ $ Current assets Cash 1,037, ,037, ,893 Term deposits 400, , , ,672 Investments Million Dollar Club , , ,826 Accounts receivable Provincial chapters 9, ,339 10,000 42,533 66,197 General Fund ,000-50,000 50,000 Other 81, ,735 1, ,248 77,822 Prepaid expenses 161, ,546 4,233 1,689, ,000 93, ,029 2,374,654 1,883,643 term deposits 25, , ,607 1,058,712 investments million Dollar Club ,555 1,717,744 1,830,299 1,764,956 Property and equipment - 20, ,687 20,677 1,715,158 20,687 1,000, ,629 2,109,773 5,051,247 4,727,988 liabilities Current liabilities Accounts payable and accrued liabilities 148, , ,923 Account payable to Research Fund Million Dollar Club 50, ,000 50,000 Deferred contributions 1,334, ,334,289 1,119,651 Fund balances 1,533, ,533,077 1,369,574 unrestricted 182, ,081 38,523 invested in property and equipment - 20, ,687 20,677 internally restricted Contingencies Fund - - 1,000, ,000,000 1,000,000 research Fund million Dollar Club , , ,367 endowment Fund million Dollar Club , , ,277 externally restricted ,934,496 1,934,496 1,839, ,081 20,687 1,000, ,629 2,109,773 3,518,170 3,358,414 1,715,158 20,687 1,000, ,629 2,109,773 5,051,247 4,727, Extract from the audited financial statements prepared by PriceWaterhouseCoopers. The complete audited financial statements are available upon request by mail or on the CHS Web site.

21 Canadian Hemophilia Society Statement of Revenue and Expenses For the year ended December 31, 2013 ProPerty AnD research FunD GenerAl equipment million FunD FunD DollAr Club total total $ $ $ $ $ revenue Public support 276,451-15, , ,331 Corporate support 1,679,308-11,523 1,690,831 1,975,163 Investment income 31,200-40,633 71,833 92,183 1,986,959-68,140 2,055,099 2,333,677 expenses Programs 1,237,870 2, ,000 1,425,237 1,687,536 Resource development 280,812 2, , ,795 Governance 77, ,786 52,163 Administration 191, , , ,655 1,788,218 5, ,878 1,990,269 2,321,149 excess of revenue over expenses (expenses over revenue) for the year 198,741 (5,173) (128,738) 64,830 12,528 Canadian Hemophilia Society Statement of Changes in Fund Balances For the year ended December 31, ProPerty AnD research FunD endowment FunD GenerAl equipment ContinGenCieS million million FunD FunD FunD DollAr Club DollAr Club total total $ $ $ $ $ $ $ balance beginning of year 38,523 20,677 1,000, ,367 2,014,847 3,358,414 3,290,739 Excess of revenue over expenses (expenses over revenue) for the year 198,741 (5,173) - (128,738) - 64,830 12,528 Endowment contributions ,926 94,926 55,147 Investment in property and equipment (5,183) 5, Transfer to Research Fund Million Dollar Club (50,000) , balance end of year 182,081 20,687 1,000, ,629 2,109,773 3,518,170 3,358,414 Extract from the audited financial statements prepared by PriceWaterhouseCoopers. The complete audited financial statements are available upon request by mail or on the CHS Web site. 21

22 NATIONAL OFFICE University Street Montreal, Quebec H3B 3B6 Tel.: Toll-free: PROVINCIAL OFFICES Manitoba Chapter 944 Portage Avenue Winnipeg, Manitoba R3G 0R1 Tel.: Toll-free: Hemophilia Ontario Wellesley Street E Toronto, Ontario M4Y 1G7 Tel.: Toll-free: info@hemophilia.on.ca Quebec Chapter Sherbrooke St. E. Montreal, Quebec H2K 1C3 Tel.: Toll-free: info@schq.org NATIONAL STAFF David Page National Executive Director Joyce Argall Natonal Individual Giving Manager Hélène Bourgaize National Director of Chapter Relations and Human Resources Deborah Franz Currie National Director of Resource Development Stéphane Lemieux Chief Accountant Rachel Leslie National Executive Assistant Michel Long National Program Manager Chantal Raymond National Communications Manager To contact our 7 other provincial chapters, please consult our Web site at 22

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Thanks to you! In 2016, your donation was instrumental in helping the CHS. Provide valuable support and education.

ANNUAL GRATITUDE REPORT Thanks to you! In 2016, your donation was instrumental in helping the CHS Provide valuable support and education. Maintain proper care and treatment across the country. Provide