Alberta News

August 2023

 
Important Links

Contact Information


About Our Chapter


Canadian Hemophilia Society Website


Research


Products in the Pipeline

Clinic Contact





 

Welcome to Another Addition of the CHS Alberta Chapter Newsletter

See this months newsletter for all your updates on 2023 events and other important information.


Please visit the CHS Alberta Chapter through our Facebook page, instagram and website to find out more about all of our different opportunities.


All members and their guests are welcome at events.


CHS Alberta Chapter 

Alberta Chapter News

 

Dear Members, 


Ever thought of joining the Canadian Hemophilia Society Alberta Chapters board of directors? Now is your chance! We are always looking for new board or committee members to join the Canadian Hemophilia Society.


Please email us at albertachapter@hemophilia.ca to receive your nomination form.



Deadline to submit your nominee is August 30th, 2023


Vote to be held at our AGM on Sept 30th, 2023 at Pine Lake Camp, Alberta



Thank you,


CHS Alberta Chapter Board of Directors

Donate Now

Upcoming Events

Annual Weekend Retreat and Annual General Meeting


Sept 29 - Oct 1, 2023

Pine Lake, Alberta

Join us for our Annual General Meeting at the end of September. For a small fee you and your guests may spend the weekend enjoying good food, meeting others in the bleeding disorder community and taking in all that Pine Lake Camp has to offer. The weekend has a flexible schedule of activities like canoeing, hiking, mini-golf, games and more! 


Join us for our Annual General Meeting on Saturday, September 30, 2023 and enjoy lunch at Pine Lake.


or


Come out Friday Sept 29th and stay for the whole weekend.

All meals and accommodations are provided.


Registration now open


For more information click here.


All members and their guests welcome

Register Now

Kids Bleeding Disorder Camp 2023

This year's kids bleeding disorder camp was a huge success. Thank you to all of our health care providers and campers for joining us.


If you/or someone you know has kids ages 7-17 years old, with a bleeding disorder, who would like to attend camp in 2024, please click here for more details or email us at albertachapter@hemophilia.ca to get your application today!

Thank you to our valued sponsor

Important Notices

Important CHS Youth and Adult Survey on Gene Therapy 

Companies will likely make submissions to Health Canada for approval of gene therapies for hemophilia A and B in the next 6-12 months. To best represent people with hemophilia with regulators, health technology assessment bodies and provincial/territorial governments, the CHS needs patient input.


If you …


  • have severe hemophilia A or B
  • are 14 years of age or older
  • live in Canada


… please complete this 12-question survey regarding gene therapy.

Answers are completely anonymous. Thank you for providing your valuable input to the CHS and thank you for sharing this invitation with your chapter members. The survey will close on September 1, 2022.



CLICK HERE  to take the survey.




The results of the 26 Canadian treatment centres’s self-assessments are now available in a complete national report.


Read Report Now

Now its your Turn!


WELCOME TO THE STANDARDS OF CARE PATIENT SATISFACTION SURVEY


This survey is intended to identify strengths and weaknesses in the care and treatment services provided by your (or your child’s) treatment centre from the patient’s or caregiver’s point of view.


The information gathered will be used to evaluate how well the centre is meeting the Canadian Integrated and Comprehensive Care Standards for Inherited Bleeding Disorders.


The goal is continuous improvement.


Please take the time to complete the survey and contribute to optimal care and treatment.


Link to access the Standards:


www.hemophilia.ca/integrated-and-comprehensive-care-standards

In Case You Missed It

2023 CHS ACADEMIC SCHOLARSHIPS

and

BURSARIES RECIPIENTS from Alberta

Living with a chronic bleeding disorder has presented numerous physical and financial challenges. I come from the Middle East, where there was a shortage of medicine and care for years. Yet I continued to push my limits and explore my potential, bringing me to chiropractic care, where I intend to pay it forward one day.


This scholarship serves as a reminder that the academic community recognizes and values my perseverance and determination. It reinforces my belief that I can overcome any obstacle and contribute meaningfully to the field of chiropractic care.


I am deeply grateful to the James Kreppner Scholarship Committee for their unwavering support. This opportunity will undoubtedly empower me to make a difference in the lives of others. I am honoured to receive this prestigious award and will carry the spirit of generosity with me throughout my career.

When I was in my early twenties, my twin daughters had an unusual tendency to bruise easily. This eventually led us to discover that we all had factor VII deficiency and von Willebrand disease. This diagnosis finally shed light on years of unexplained bleeding, multiple hospital admissions, and surgical complications.


This personal health discovery deeply influenced my life. It has been a driving force in my ten-year health care career, where I coordinate a rural internal medicine ambulatory clinic, and in my pursuit of an undergraduate degree in biological sciences and research. Inspired by my experiences, I aspire to blend my professional journey and personal insights to enhance patient advocacy and medicine. My aim is to provide valuable support to those navigating similar health challenges.


I’m really excited about the knowledge and skills I’m going to gain from my studies, and I can’t wait to use them to make a real difference in people’s lives. A big thank you to the Canadian Hemophilia Society and the James Kreppner Memorial Scholarship and Bursary Program.


Your support is not just helping me with my education, it’s also helping to improve patient advocacy within our health care system.


Hemlibra - New booklet available

This brand new booklet will answer all your questions about Hemlibra, one of the latest treatments for people with clinically severe hemophilia A without factor VIII inhibitors, who need prophylaxis to prevent bleeding.