organized by

presented by

September 10-11, 2021VIRTUAL

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General informationTECHNICAL SUPPORTIf you encounter any technical issues before or during the conference, please call 1-866-358-6755, #0 or send an e-mail to coderouge2021@agoraopus3.com.

SIMULTANEOUS TRANSLATIONAll sessions will be presented in English, however French simultaneous translation will be available. We invite you to select the appropriate session indicated as such. However, simultaneous translation for the break-out sessions will be available only after the conference once the webcasts have been shared on the CHS YouTube channel.

BREAK-OUT SESSIONSOn Saturday, September 11, from 11:40 to 12:00, and again from 12:05 to 12:25, three different topics will be presented in the format of break-out sessions. You will need to choose which two presentations you wish to attend. At the time of the break-out sessions, we invite you to select the two sessions that interest you.

Combination of oral contraception and tranexamic acidDr. Nicole Todd, Vancouver General Hospital

Female patients with unidentified bleeding disordersJulia Hews-Girard, RN, University of Calgary

Non-invasive surgical techniques to treat heavy menstrual bleedingDr. Sony Singh, The Ottawa Hospital

Q&AIt will be possible for all attendees to send in questions to the speakers during and right after the presentations. We will try to answer as many questions as possible.

VIRTUAL EXHIBITION HALL virtual exhibition hall is accessible via the event’s home page. Exhibitors

represent companies that provide products and information to people with inherited bleeding disorders. The exhibition hall hours are as follows:

Friday, September 10 11:30 – 11:45 13:00 – 16:00

Saturday, September 11 8:00 – 10:00 11:25 – 11:40 13:15 – 16:00

CONFERENCE EXHIBITORSCSL BehringNovo NordiskTakeda

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WELCOMEIt is my pleasure and privilege to welcome you all to - 3rd Canadian Conference on bleeding disorders in women. You join women from across Canada who experience increased bleeding, who may not be properly diagnosed, may not be heard, may have sound care or may have challenges to access to care. You are here to hear from us, but more importantly we are here to hear from you.

Together with our health care provider associations and our entire CHS membership we provide this welcome. We also want to acknowledge our presenting sponsor, Takeda, and our supporting sponsors, CSL Behring and Novo Nordisk – without their commitment and support this conference would not happen.

Now it is time for you to sit back in the comfort of your home and become a part of an incredible community of women who share in the triumphs and tribulations of living with bleeding. It is this community that gives us the purpose and the reason exists. So again, welcome and enjoy!

Wendy QuinnPresident of the Canadian Hemophilia Society

On behalf of the Planning Committee and the Women and Bleeding Disorders Committee of the AHCDC, it gives me great pleasure to welcome you to the conference. This year’s virtual platform is original and promises to deliver rich content related to women and inherited bleeding disorders through interactive and didactic sessions in the form of formal lectures, break-out sessions, a panel discussion and a debate, bringing together expertise in hematology, obstetrics and gynaecology, physiotherapy, psychology, and social work in partnership with patients. We are delighted to be joined by renowned experts who will provide insight into patient relevant outcomes in heavy menstrual bleeding and transcultural experiences of women with bleeding disorders. The Red Hot topics session will deliver recent updates that will directly influence clinical practice. I am excited to have had the privilege to chair this meeting that I hope recognizes the many women and girls who suffer both outwardly and inwardly from being affected with a bleeding disorder and enlightens caregivers on relevant matters to optimize care. I can think of no greater honour! Enjoy the meeting and I look forward to seeing you all in person at the next event.

Rochelle Winikoff, MD, FRCPCChair of the Women and Bleeding Disorders Committee

of the Association of Hemophilia Clinic Directors of Canada (AHCDC)Chair of

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September 10-11, 2021

PLANNING COMMITTEEStefan Branov, CSWHC Dr. Tania Dumont Karen Fahey, CHS

Sara Israels, AHCDC Paula James, AHCDC Chantal Raymond, CHS Emily Rimmer, AHCDC Rochelle Winikoff, AHCDC

All times indicated on the conference schedule are Eastern Daylight Time (EDT).

Friday, September 10, 2021WELCOME AND OPENING REMARKS

10:00 - 10:15 Wendy Quinn, president of the Canadian Hemophilia Society

Dr. Rochelle Winikoff, chair of the Women and Bleeding Disorders Committee of the AHCDC and chair of

SESSION 1

Moderator: Sara Israels, AHCDC

10:15 - 10:35 Patient impact/outcomes of heavy menstrual bleedingDr. Leonard Valentino, President and CEO, National Hemophilia Foundation, Illinois, U.S.A.

10:35 - 10:55 RED HOT topics in women and bleeding disorders

Sexuality and bleeding disordersGreig Blamey, PT, Health Sciences Centre, Winnipeg

New VWD guidelines - some highlightsDr. Paula James, Kingston General Hospital, Kingston

New quality of life score in adolescent menorrhagiaDr. Meghan Pike, IWK Health Centre, Halifax

A new hemophilia carrier nomenclature to define hemophilia in women and girlsDr. Robert Sidonio, Emory University, Georgia, U.S.A.

10:55 - 11:15 Hemophilia management in perinatal settingsDr. Vicky Price, Pediatric Bleeding Disorder Clinic, IWK Health Centre, Halifax

11:15 - 11:30 Questions, comments and reactions from the conference attendees

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11:30 - 11:45 COFFEE BREAK

SESSION 2

Moderator: Ali Amid, AHCDC

11:45 - 12:15 Living with a bleeding disorder: beyond the diagnosisInterview led by Stefan Branov, MSW RSW, with Karen Fahey, Quebec, and Joanna Halliday, Alberta

12:15 - 12:25 Questions, comments and reactions from the conference attendees

12:25 - 12:55 Debate: Iron deficiency: Oral versus intravenous ironDr. Michelle Sholzberg, St. Michael’s Hospital, TorontoDr. Rochelle Winikoff, CHU Sainte-Justine, Montreal

CLOSING REMARKS OF DAY 1

Saturday, September 11, 2021OPENING REMARKS

10:00 - 10:10 Dr. Rochelle Winikoff, chair of

SESSION 3

Moderator: Nicole Laferriere, AHCDC

10:10 - 10:30 Measuring heavy menstrual bleeding (HMB)Dr. Tania Dumont, The Ottawa Hospital/Children’s Hospital of Eastern Ontario

10:30 - 10:40 Questions, comments and reactions from the conference attendees

10:40 - 11:25 Access to care for patients in remote areas

Panelists:

Dr. Sumedha Arya, Ontario

Therese Benoanie, Saskatchewan

Dr. Roshni Kulkarni, U.S.A.

Wendy Quinn, Saskatchewan

Pam Wilton, Ontario

11:25 - 11:40 COFFEE BREAK

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BREAK-OUT SESSIONS

11:40 - 12:00

AND

12:05 - 12:25

Combination of oral contraception and tranexamic acid

Moderator: Dr. Emily Rimmer

Speaker: Dr. Nicole Todd, Division of General Gynaecology & Obstetrics, Vancouver General Hospital

11:40 - 12:00

AND

12:05 - 12:25

Female patients with unidentified bleeding disorders

Moderator: Dr. Margaret Rand

Speaker: Julia Hews-Girard, RN, University of Calgary

11:40 - 12:00

AND

12:05 - 12:25

Non-invasive surgical techniques to treat heavy menstrual bleeding

Moderator: Dr. Diane Francoeur

Speaker: Dr. Sony Singh, Department of Obstetrics, Gynecology & Newborn Care, The Ottawa Hospital

KEYNOTE ADDRESS

Moderator: Rochelle Winikoff, AHCDC

12:30 - 13:15 Transcultural experiences and issues in the care of women and girls with bleeding disordersDr. Roshni Kulkarni, Professor Emerita of Pediatrics and Human Development, Michigan State University Center for Bleeding and Clotting Disorders

CLOSING REMARKS

Wendy Quinn, president of the Canadian Hemophilia Society

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GUIDELINES FOR EMERGENCY

MANAGEMENT OF RARE INHERITED

BLEEDING DISORDERS

TreatFirst

Association of Hemophilia ClinicDirectors of Canada

www.hemophilia.ca/emergency

Canadian Hemophilia SocietyHelp Stop the Bleeding

Patient Information:

Name:

Date of birth:

Diagnosis:

Severity: Level:

Other medical information:

Date of recommendation: / /

Signature of physician:

Recommended Treatment:

Product and dose/kg for life or limb-threatening bleeds:

Product and dose/kg for moderate/minor bleeds:

SCH_CARTE_TREATFIRST_ANG.indd 1 2018-04-20 2:20 PM

CHS educational resources dedicated to women

The Canadian Hemophilia Society has an extensive educational catalogue. Among its resources, many are dedicated to women and bleeding disorders and von Willebrand disease. Here is the complete list of material available to download or to order from the CHS website at www.hemophilia.ca/print-catalogue.

All About Carriers

All About Hemophilia: A Guide for Families / Chapter 14 - Symptomatic Carriers of Hemophilia

All About von Willebrand Disease

Cyklokapron - A Guide for Patients and their Caregivers

Desmopressin - A Guide for Patients and Caregivers

Emergency care for patients with von Willebrand disease (PDF only)

FactorFirst card

Guidelines for the diagnosis and management of von Willebrand disease (VWD)

Management of Women with Bleeding Disorders (The) (PDF only)

Me and My Genes - INTERACTIVE VIDEO

Platelet function disorder booklets (3)

Rare factor deficiency booklets (8)

TreatFirst card

Von Willebrand Disease ... the Most Common Bleeding Disorder: Your Questions Answered

Von Willebrand Disease: What School Personnel Should Know

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Acknowledgements

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 .

PRESENTING SPONSOR

SUPPORTING SPONSORS