Women & Inherited Bleeding Disorders;
From Diagnosis to Treatment
The Chapter, in collaboration with the Manitoba Bleeding Disorders Program, is proud to offer the Women & Inherited Bleeding Disorders; From Diagnosis to Treatment, dinner, lecture and workshop evening on October 1 st. We will discuss the challenges in diagnosing and treating women with inherited bleeding disorders.
We are very excited to have our own members speak as well as welcome our special guest speaker, Dr. Paula James, Medical Director of the Inherited Bleeding Disorders Clinic of Southeastern Ontario. This event is open to women with inherited bleeding disorders (Von Willebrand Disease, rare bleeding disorders, carriers of hemophilia) their family and healthcare providers. If you suspect you may have an inherited bleeding disorder or are waiting for a diagnosis, this evening will be very important to you!
There is no cost to attend. Please register at info@hemophiliamb.ca or call 204.775.8625 to reserve your spots. Registration closes on Thursday, September 27 th. |
|
Learning to learn and passing it on
PLEASE NOTE THAT THE DEADLINE HAS BEEN EXTENDED TO SEPTEMBER 21 AND THAT THE MINIMUM AGE HAS BEEN REDUCED TO 50 AND OVER
The Canadian Hemophilia Society retreat entitled Learning to learn and passing it on was initiated as a result of the session on ageing with a bleeding disorder held during Rendez-vous 2017. Its goal is to address current needs of people ageing with a bleeding disorder and to help address future needs. The CHS will offer about 30 sponsorships to enable Canadian men and women, aged 50 years and over, living with a bleeding disorder, and/or their caregiver/support person, to attend the retreat taking place at the Chantecler Hotel in Sainte-Adèle, Quebec, November 2-4, 2018.
For the purpose of this workshop, the expression “caregiver” or “support person” is defined as an unpaid person, usually within the family environment, who provides personal assistance, emotional support and/or physical care to a person with a bleeding disorder, 50 years of age or older.
The sponsorship program is open to Canadian men and women with an inherited bleeding disorder, aged 50 and over. The retreat is also open to their caregivers / support persons whether they attend with the person they care for or not.
A Selection Committee will choose the participants from the received applications based on their qualifications, and geographical criteria to ensure national representation (as much as possible) and a good balance among participant profiles.
Interested participants must complete the attached application form and forward it to the CHS before 5 p.m. September 21, 2018. Sponsorship recipients will be notified by late September.
For more information and a copy of the application form, please visit our website at: https://www.hemophilia.ca/learning-to-learn-and-passing-it-on/
|
|
2018 Golf Tournament
Thank you to the sponsors, golfers and volunteers that made the September 4th Golf Tournament such a fantastic day! Despite the rain overnight, the weather improved to give us a pretty nice day. We had a great group of golfers and a wonderful team of volunteers. It was a great experience to work with the Canadian Liver Foundation, Manitoba Region and we hope to see them back in 2019. Watch for the photos on our Facebook page and on the Chapter website.
|
|
Canadian Bleeding Disorders Registry (CBDR) and MyCBDR Study
Research participants are needed for a study that is assessing the ease-of-use and user experience of the Canadian Bleeding Disorders Registry (CBDR) and MyCBDR from the perspectives of end users. The study is being conducted to identify any shortcomings with the system that can be corrected and to understand how the uptake of these systems can improve disease management. The study is conducted in English only.
This study is funded by the Canadian Hemophilia Society/Pfizer Care Until Cure Research Program.
There are two different options for participating in this study:
For those who have already starting using MyCBDR…
They are invited to participate in a 20-25 minute interview where they will be asked questions about their experiences, opinions and perceptions of the system. The interview can be done by phone, Skype, or web-conference (depending on the participant’s preference). Participants will be given a gift card to Starbucks or Home Depot or Indigo.
For those who have not yet started using MyCBDR…
They are invited to participate in two web conference sessions, the first lasting one hour and the second 30-45 minutes. The first will take place just before they start using the system and the second three months later. During the first session, three methods will be used to collect data from the participants: a “think aloud” where they work through a series of tasks in the MyCBDR training site while thinking out loud, an interview, and a 10-item questionnaire. The second session will only include the interview and questionnaire. After each web-conference, participants will be given a gift card to Starbucks or Home Depot or Indigo
To participate, or for more information, please contact study coordinator Shannon Lane.
E-mail: lanesj@mcmaster.ca
Phone: 905-525-9140 ext. 21788
Efforts will be made to publish study findings in a peer reviewed journal and findings will also be shared in an article in Hemophilia Today.
This study has been reviewed by the Hamilton Integrated Research Ethics Board HiREB 1929.
|
|
2018 Grey Cup Pool Needs You!
It’s that time of year again! We have two pools of tickets to sell. The tickets come in sets of 10 and sell for $5. The Grey Cup Pool funds all of our Members Services: parking at HSC, Medical Alert bracelets, wheelchair rentals, crutches, product delivery, rural accommodation and transportation and more. Can you sell some tickets? Please contact the Chapter office at 204.775.8625 or email info@hemophiliamb.ca
We have two dates to sell tickets at HSC already booked. If you can volunteer between 9:30 am and 2:30 pm on Friday November 16 th or 23 rd, please contact the Chapter office.
 |
|
Looking for a fun way to get involved?
 The 2019 Gala Dinner Committee is getting ready for their first meeting on September 27th. Katherine Cameron, Committee Chair, would like to extend an invitation to members who are looking for ways to get involved with the Chapter, to come and see what the committee does.
Not interested in meetings? Not a problem! Some of the committee members come to a few meetings and work on their own. Worried it will be a lot of work? Not a problem! We have a large team of experienced members so it is the perfect time to see if there is a sub-committee that interests you without the pressure of taking on a huge project. Just want to lend a hand? We are always looking for members to help us get prize donations, pick up donations and promote the event to friends and family.
Interested? Contact the Chapter office at 204.775.8625 or email info@hemophiliamb.ca
|
|
Dates to Watch!
September 20-24th - Chapter Office Closed
October 1st - Women & Bleeding Disorders Dinner with guest speaker, Dr. Paula James
October 21st - Run 4 Your Cause
|
|
Thank you Chapter Update Sponsors
|
|
|
|
