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CHS-MC Chapter Update September 9, 2021
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In this Issue:


HEMLIBRA APPROVED, CODEROUGE2021, It's OK to Not Be OK, Every Step Counts, Grey Cup Pool 2021, Gala 2022 
Hemlibra Approved by Provinces and Territories 

From CHSCONTACT 


 

September 9, 2021, Montréal – The Canadian Hemophilia Society (CHS) was informed late yesterday by Canadian Blood Services (CBS) that access to Hemlibra (emicizumab) will be expanded to include all those with severe hemophilia A (less than 1% FVIII) without inhibitors, with no age restrictions. CBS procures and distributes coagulation products, including Hemlibra to all provinces and territories except Quebec.

Certain details need to be finalized with the manufacturer, Roche. It is expected that Hemlibra will be available in hemophilia clinics in mid-October.

The listing of Hemlibra on the Héma-Québec formulary was announced in August, though there is no firm date for availability and access criteria remain to be clarified.

On behalf of the hemophilia A community, the CHS would like to thank all those who lent their voices to our efforts to add this innovative therapy to the range of FVIII coagulation products.

CODEROUGE2021 with CHS-MC at Canad Inns Polo Park 



Please register by noon tomorrow for the CHS-MC program. Register with CHS-MC
The Canadian Hemophilia Society, Manitoba Chapter is inviting members to join us this Saturday, the 11th, to watch the Saturday morning CODEROUGE2021 program together, have lunch and talk about upcoming advocacy and public awareness programs for women with inherited bleeding disorders.
 
The CHS is thrilled to be organizing the 3rd Canadian conference on bleeding disorders in women to take place virtually on the mornings of September 10 and 11, 2021.

It’s in 2011 that the CHS initiated its national awareness program, CODEROUGE  |  WHEN WOMEN BLEED TOO MUCH. We have come a long way since the launch of this important program, but there is still so much to learn and do to succeed in having a proper diagnosis for women with bleeding disorders. It still takes an average of 16 years for a woman to receive a proper diagnosis. This has to change. Education and knowledge is key to ensure adequate care for women affected with bleeding disorders.

Have a look at the  CODEROUGE 2021 Program and see the excellent speakers and topics covered. Please note the program is in Eastern Standard Time so the morning begins at 9 am in Manitoba.
Register with CHS to have access to the Friday /Saturday Virtual conference.
Register with CHS-MC to join Chapter members at Canad Inns Polo Park for the Saturday program. 
 


It's been a hard time for all of us. We've had to adapt to so many changes and at times have been in conflict with friends and family. This virtual workshop will be guided by two experienced healthcare professionals. Tasha is a psychiatric liaison nurse at HSC and we all know and are comfortable with Patty, our social worker with the Manitoba Bleeding Disorders Program. This will be a safe and confidential space where we can talk about: 
  • Anxiety: having to go to the hospital, school, work
  • Isolation from friends and family/support system. 
  • Strains on personal relationships (marriage, children, roommates)
  • Depression – signs and symptoms
We hope you will join us! Register

Every Step Counts! 




I just want to congratulate everyone who participated in the “Every Step Counts” program, Great Job! Here are a few statistics from the program.
  • Total steps done by the group: 2,871,839!
    • An estimated 2188 kilometers
    • We collectively walked from Winnipeg to Vancouver!
  • 2 people cracked the 100,000 weekly step count!
  • We had a total of 468 entries into the draw
The draw for prizes was held on September 8th. 1st prize was a $100 Keg gift cards and we had 3 prizes of $25 SportChek gift cards. All winners were notified. 

One thing for sure the summer was not kind to us with the heat, but by looking at the numbers, everyone persevered!
Again, congratulations to all and we hope to see you join us next summer!

John Rogasky, Chair of the Healthy Aging Committee

Grey Cup Pool 2021! 

 


More than ever we need your help to sell Grey Cup Pool tickets. We are looking for members to take books of 10 tickets. Would you take some tickets? The proceeds from the Grey Cup Pool are used to fund Member Services and Chapter Programs.

If you can take some tickets, please contact us at info@hemophiliamb.ca  and let us know how many books you would like. We'll get them out to you asap! 

If you would like to purchase tickets online and pay through PayPal, please go to Grey Cup Pool 2021 Order Form

If you would like to purchase tickets directly from the office, please call 204.775.8625 or email info@hemophiliamb.ca

Go Bombers GO! 

2022 Gala Committee Looking for Members  



The 2022 Gala Dinner of Culinary Inspirations will be held at the Delta Hotel by Marriott Winnipeg on Saturday, March 26th! f you have attended this event in the past, you know how much fun it is! The Gala Dinner is the Chapter's largest fundraiser. 2022 promises to be a welcome back to a fantastic culinary adventure and dancing! 

Do you enjoy throwing parties and having fun? Are you looking for a way to become more active in the Chapter? The Gala Dinner planning committee is looking for some new members to join the group to help plan the event. The current committee is very experienced but is eager to welcome new ideas and make new connections to the community.  Meetings will begin in early September. The committee usually meets once a month and sub-committees work independently. Planning will be a mix of virtual and in-person meetings. Contact Us

Do you want to learn more about the Gala Dinner? Please visit the Gala website and the Gala Volunteer job positions.

Thank you Chapter Update Sponsors! 

 
Copyright © 2021 Canadian Hemophilia Society, Manitoba Chapter, All rights reserved.


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