Noel Anema is a young severe hemophiliac from Grande Prairie, Alberta. He graduated from the University of Calgary in 2023 with a bachelor’s of art in ancient and medieval history.

He has worked as both an archivist and a research assistant for the University of Calgary’s faculty of Classics and Religion and specializes in Byzantine archaeology. When not in school or reading, he can be found rock climbing, hiking, camping, or at a thrift store collecting fun mugs.

As a hemophiliac, he grew up with the Alberta Chapter and attended bleeding disorder camps throughout his childhood. His experience as someone with hemophilia informs him on his decision making process and always keeps his mind on the families affected by bleeding disorders.

If you have an interested in joining our board. Please contact us for further information.

Bruce Ritchie works to improve the lives of Canadians with rare blood disorders. Over three decades, the hematologist, professor and patient advocate has led research and clinical trials seeking treatments where none historically existed. He created Canada’s largest program for angioedema and immunodeficiency patients to treat themselves with blood products at home rather than in hospitals, saving the Alberta health system about $3 million annually. He developed Canada’s largest red-cell exchange program and supervised the first Canadian adult stem cell transplant for sickle cell disease in 2017. That clinic has now done 10 transplants and remains the only centre in Canada doing them.

Nationally, Ritchie was instrumental in safeguarding supplies with a surveillance program for blood-borne pathogens, a tracking program for blood products used in patient homes, and co-founding the Network of Rare Blood Disorder Organisations. Growing out of this work, Ritchie built the Canadian BioSample Repository, a U of A-based bio-bank used globally in clinical studies. A supervisor of 80-plus research students, Ritchie is proud of his mentees who continue to advance knowledge and improve care in the field.

Congratulations Dr. Ritchie

What is the Hemophilia Research Million Dollar Club (HRMDC)?

Ken Poyser, a man with severe hemophilia, who passed away in 2010, had a dream. He dreamed of an endowment of at least $1,000,000 to provide funding for inherited bleeding disorder research in Canada. In order to reach this dream, in 1984, with the help of Richard O’Shaunessey, Ed Kubin and many other committed people, the Hemophilia Research Million Dollar Club (HRMDC) was created. In less than six years, the HRMDC reached its million dollar goal!

In 2000, Frank Bott, the father of two sons with hemophilia, also had a vision. His dream was to increase the endowment of the Club to $1.6 million and he spearheaded an ambitious fundraising campaign to which the Club will be forever grateful. Thanks to his efforts and the support of the Canadian Hemophilia Society (CHS), its chapters and regions, and individuals, this goal was attained at the end of 2004 and the fund continues to grow steadily to this day.

The capital of this endowment cannot be touched and this is why it is so important to continue to grow the endowment so that the earnings may be applied to research. The HRMDC, in partnership with the CHS, allocates money on a yearly basis to research encompassing a great range of projects.

The HRMDC is a dedicated fund of the Canadian Hemophilia Society. The CHS is the sole beneficiary of research funding through its research program, Dream of a Cure. The Administrators, who are elected by the Voting Class Certificate holders for a term of three years, handle all the operations of the HRMDC, make investment recommendations, solicit contributions, and advise the CHS Board of Directors on how much money is available for research in a particular year.

The HRMDC does not decide what research will get funding. Rather, this is the responsibility of a professional peer group of physicians and researchers appointed by the Canadian Hemophilia Society. The CHS Board of Directors approves all recommendations made by the Administrators and Voting Class Certificate holders.

Stollery Children's Hospital - Pediatric Hematology Edmonton

As many of you are aware, both the Adult and Pediatric treatment centres in Alberta have changed the way that Hemlibra is dispensed to patients. This is a pilot project being trialed in Alberta, with the goal of easing pressures on hospital blood banks, and eliminating the need for people to enter hospitals to pick up their Hemlibra.

Canadian Blood Services is working with Bayshore Pharmacy and the clinics to refine this process. The current process for families won't change in that they need to place their order for Hemlibra to the HTC when they have 2 weeks of Hemlibra remaining.

The HTC staff will ensure that MyCBDR records are up to date and will then provide Bayshore with an order to release the Hemlibra. Bayshore will then contact the family to secure a delivery place and time. Bayshore won't be making deliveries for Hemlibra between December 21^st and January 3rd, 2024.

Please ensure that your MyCBDR records are up to date prior to calling the HTC to place an order. This information is integral in ensuring that the current treatment plan is appropriate and that no adjustments need to be made.

If you have any questions or concerns about this please contact your HTC.

Southern Alberta Hemophilia Program – Foothills Medical Center Calgary

Holiday Hours: 

The clinic will be closed Monday, December 25 (Christmas Day) and Tuesday, December, 26 (Boxing Day). As well as Monday, January 1, 2024.(New Year’s Day).   

Factor Orders: 

In preparation for the holiday season, we ask that you please determine how much factor you will need to get you through the holiday and place your order for home factor during the first 2 weeks in December. If you have any travel plans, make sure you request a travel letter as well as a few extra doses of factor in the event of any unforeseen disruption in your travel plans.  

Comprehensive Clinic: 

Our comprehensive clinics are fully booked for the next 8 months and have a huge waitlist for follow ups and new referrals. It’s important to call the clinic in advance (403-944-4057) if you cannot make your appointment, so that we have adequate time to fill that appointment. 

Finally we would like to wish everyone a safe and happy holiday season! Stay bleed free!!! 

RBBD Team

A series of podcasts featuring well-known patient and physician experts will provide important answers, for example: What are the clinical trial results in hemophilia GT? What is the shared decision-making process in hemophilia GT? What is it like to receive it? What other approaches to hemophilia GTs are down the road

Health Canada has approved Hemgenix gene therapy for hemophilia B.

You can read all about it at:



https://chscontact.ca/health-canada-approves-hemgenix-gene-therapy-for-hemophilia-b.



The First Edition of the Canadian Comprehensive Care Standards for Hemophilia and Other Inherited Bleeding Disorders was published in June 2007. It has proven invaluable in guiding health care providers in treatment centres, hospital administrators, ministries of health and the patient association in the coordination and delivery of “integrated” or “comprehensive” care for people with bleeding disorders. Much, however, has changed since then. The 2020 updated version was needed to reflect current best practices.

Link to access the Standards:

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

Opportunities to participate in marketing research studies

From time to time the CHS collaborates with market research companies. We believe that market studies can provide valuable information to companies on how to improve their products and services.

Keep your eyes open for postings about future market research studies.

The 1986-1990 Hepatitis C Settlement

The court decision about the 2019 surplus of the 86-90 fund has now been uploaded on the https://www.hepc8690.ca/home-e.shtml website.



Support Maia and Craig in Raising Funds

and

Awareness about Women with Inherited Bleeding Disorders

On Friday, June 30, Maia Meier and Craig Upshaw started their climb of Mount Kilimanjaro and successfully reached the top a few days later. Both Maia and Craig experience complications of living with an inherited bleeding disorder but thanks to perseverance and innovations in treatment, they have trained and prepared to reach the summit. This is no small feat for anyone but considering the challenges they have faced physically with their bleeding disorder, the challenge is raised to another level.

In recognition of the challenges that women with inherited bleeding disorders face in receiving a diagnosis and timely treatment, Maia and Craig asked for your help to support programs in our community members.

Women with an undiagnosed and untreated bleeding disorder risk serious complications that may even lead to unnecessary hysterectomies. On average, it takes up to 16 years before a woman finally gets a proper diagnosis. After years of suffering, once diagnosed, effective treatment is available, and a woman’s quality of life improves dramatically. It is therefore critical to raise awareness about bleeding disorders so that accurate and timely diagnoses are provided to affected women.

Women with bleeding disorders tend to have more symptoms than men because of menstruation and childbirth. Bleeding disorders are all too often undiagnosed or misdiagnosed and the symptoms of heavy or prolonged menstrual periods are ignored.

Maia and Craig are longstanding volunteers with the Canadian Hemophilia Society (CHS), both at the national level on the Board of Directors and at the provincial level as presidents of their respective chapters. Craig held the position of CHS president from 2010 – 2017.



Join us in their quest to reach new heights and support the Canadian Hemophilia Society.

READ THE STORY OF THEIR INCREDIBLE ADVENTURE