Our Partners











Awareness

The Alberta Chapter works toward raising awareness of inherited bleeding disorders like Hemophilia and von Willebrand, through outreach efforts. We reach out to schools and teachers, doctors offices and women's shows to educate about bleeding disorders that can or may be affecting you or someone close to you.

In this section
Visit our Events and Programs pages for further activities and outreach programs.

Process to order and pick up product - Edmonton Clinic update

The Centre for Bleeding Disorders requires 2 weeks notice to order product. Not all products are always available in Edmonton. If it needs to be ordered from CBS the order needs to be in by noon Thursday to get on the weekly truck that comes on Tuesday only.

Charting Logs
Submitting your logs is an important, mandatory record for the Bleeding Disorder Clinics.

Patients are required to hand in, mail, or fax 780-407-2605 charting logs before ordering product. If the clinic does not have up to date charting logs, they are only allowed to order 1 month of product at a time.

If your charting logs remain out of date for 2 consecutive months, patients will be required to book an appointment to speak to the hematologist.  Patients who do not routinely submit records may be removed from the Home Infusion Program.

Please do not ask outside pick up sites to send your logs to us. You must send your logs yourself.

To order product
  1. call 780-407-7637
  2. Hours for product pick up are Monday to Friday 8:30 am. To 11:30 am and 1:00 pm to 3:30 pm.
  3. you will need to provide:
    • Full name
    • Health care number
    • Product name
    • Dosage used
    • How often you treat per week
    • Quantity of Product remaining at home
    • Supplies needed
    • Location of product pick up

  • Product pick up

    Once your order is received in the Centre for Bleeding Disorders you will be notified and you are required to pick up the product within 2 business days.

    If you do not pick up your ordered product it will be returned to Blood Bank Inventory and you will be required to re-order your product.

    If patients are personally unable to pick up product they will be will be required to sign a Consent for Designate Product Pick Up form.

    Questions or concerns
    • Contact the Nurses at 780 407-6588.
    • In case of an emergency, after clinic hours, or on weekends, contact Dr Bruce Ritchie(for Adults),  or Dr. Mark Belletrutti ( for Pediatrics) by calling the University of Alberta Hospital switchboard at 780-407-8822 and asking for them directly.
    • If unable to contact Dr. Ritchie or Dr. Belletrutti, please page the adult hematologist on call using the same phone number or go to the nearest Emergency Department.



    Would you like to access your NETCARE laboratory and diagnostic results online?

    NETCARE has been one of the greatest achievements of Alberta Health Services in that it enables the province’s healthcare professionals to access and share patient laboratory and diagnostic information across the entire province.

    Why can’t Alberta patients access their information directly? Patients in British Columbia and Ontario have easy and secure access to laboratory results.

    Let’s ask for NETCARE access for Albertans

    Here are three things you can do to make this happen:

    1. Send an email to your Member of Legislative Assembly (MLA) with a carbon copy (CC) to the Minister of Health, the Honourable Sarah Hoffman

    2. Complete an Alberta Health Services patient feedback form (5 minutes).

    • Alberta Health Services patient feedback form
    • Sample Comment: I have a chronic health condition that requires frequent monitoring. I would like to have online access to my laboratory results in order to better advocate for my care.


    3. Email the Alberta Government Ministry of Health with your suggestion.

    • The email address is feedback@myhealth.alberta.ca
    • Sample Suggestion: I have a chronic health condition. I would like to have online access to my laboratory results in order to better advocate for my care.

    Edmonton City Park Named After Ken Poyser

    Submitted by Juanita Pickerl
    November 4, 2015


    Legacy to a Hero

    On September 19th, 2015 a park in west Edmonton was dedicated to the memory of Ken Poyser.  It was a privilege to attend this moving ceremony honoring a man who was admired and deeply respected by so many in Edmonton, in Alberta, in Canada and across the world for his work in improving the lives of those who live with inherited bleeding disorders. 

    Ken's church and local community were the driving force behind approaching the City of Edmonton to dedicate this lovely park in honor of Ken.  The park is located in the Edmonton Rio Terrace neighborhood where Ken and Darlene Poyser had their family home and beside the Church they worshiped at.   Members of the Northern Alberta Region of the CHS were in attendance at the ceremony to whole heartedly support this initiative.  
    For four decades, Ken Poyser worked tirelessly to improve the lives of those living with bleeding disorders in Canada and abroad while facing his own challenges of living with hemophilia.  

    Ken was born in 1945 with severe factor VIII hemophilia.  The only treatment available at that time was ice and hospitalization and life expectancy was a mere 12 years.  
    Ken suffered many painful bleeds throughout his youth resulting in frequent and lengthy absences from school.  Still, Ken was determined to achieve his goals.  In spite of his medical challenges, Ken was awarded his Chartered Accountant designation in 1969 and led an outstanding and successful career. 

    Ken was among the founding members of  the Alberta Chapter of the Canadian Hemophilia Society (CHS).  Over several decades, Ken served not just locally, but as National President of the CHS  and also as an Executive member of the World Federation of Hemophilia.   In 1984, Ken also founded the Hemophilia Research Million Dollar Club.  The club continues to this day and plays an important role in funding various research projects toward finding a cure for inherited bleeding disorders.  

    In 1990, Ken received an Honorary Life Membership from the Canadian Hemophilia Society.  In 1991, Ken was recognized with the highest provincial honour by the Institute of Chartered Accountants of Alberta as a 'Fellow of the Chartered Accountants'.  Ken was also a highly respected volunteer within the Moravian Church in Canada.  In 2003, Ken received the Queen Elizabeth's Golden Jubilee Medal and a Lifetime Recognition Award from the Northern Alberta Region of the Canadian Hemophilia Society.  In 2005, Ken was the first recipient to be awarded the Canadian Hemophilia Society's International Contributions Award.  In 2008, Ken Poyser was made a member of the Order of Canada.  

    Ken Poyser passed away on September 7, 2010.  This beautiful park is a fitting tribute to a man who had such a strong sense of the value of people, community, health and quality of life.  May this park enrich the lives of Edmontonians for years to come.


    The Ken Poyser Family


    back row: Tony Poyser (son), Betty Roberts (sister),  Darlene Poyser (wife), Dylan Poyser (grandson), Jennifer Poyser (daughter-in-law),  Jordan Poyser (grandson)

    front row:  Ray Poyser (Father)








    New system to help track bleeding disorders

    The Association of Hemophilia Clinic Directors of Canada (AHCDC) created a database to record and track the number of bleeding disorder patients in Canada.  This database, known as CHARMS, was used by all Hemophilia Centres across Canada.

    Canadian Bleeding Disorders Registry (CBDR)
    On July 1, 2015 CHARMS was replaced by a new system, Canadian Bleeding Disorders Registry (CBDR). The CBDR is being introduced in all Canadian Hemophilia Treatment Centers in a phased manner.

    The CBDR will:
    • contain demographic and clinical information specific to a patients individual disease  
    • help facilitate patient care, research, resource utilization and planning

    myCBDR
    The CBDR can interface with a patient component of the system, called myCBDR. This component of the system is now available.

    myCBDR will:
    • enable patients to record their own bleeds diaries
    • view their own treatment plans
    • record blood products utilization
    • update relevant demographic information

    Some components, such as the treatment plans, will not be accessible, until the clinic has gone live with the CBDR clinical database. 

    To create a profile:
    1. Go to https://www.mycbdr.ca/MyCBDR/Account/Login to create a profile
    2. patients will be asked to consent  to the database holding certain personal information, including information related to your health
    3. read the information on consent and privacy

    The clinic is currently reviewing whether additional consent is required to migrate information from the old system - CHARMS to the new CBDR system.

    Questions or concerns
    contact your Hemophilia Treatment Centre

    More information on CBDR
    CBDR terms and conditions

    EzLog will be discontinued Aug 27, 2015
    For patients using ezlogs the system is scheduled to close down on Aug 27, 2015. From this date on EzLog no longer be accessible to view or enter logs.  Until the new CBDR system is up and running and clinic can interface with myCBDR, there will be no way to view logs electronically.  

    We are asking patients to keep a paper or other electronic diary.  We do want to stress how important it is that you continue to keep a diary.  Staff will ask to view your logs to ensure that you have the most optimal treatment plan. We thank you in advance for your patience during this transition.  

    Hemophilia 'A' study invitation


    Study opportunity with the Logit Group. They are a market research firm specializing in medical research.

    Who can participate?
    Male Hemophilia A patients



    What will I need to do?
    • An interview will be conducted on the telephone & web simultaneously and will take approximately 60 minutes to complete.
    • Interviews are being scheduled between Monday September 21st and Monday October 5th, 2015.
    • Responses of individuals will be kept strictly confidential and will be presented in aggregate with those of other participants.

    Do I receive anything for participating?
    Respondents will receive an honorarium in the amount of $200.00 for their time and participation.

    How to participate
    Email or phone to speak with Pat Manclark to answer a few screening questions and set-up the interview:
    Manclark@logitgroup.com
    1-866-845-6448 ext 245 (toll free)
    Monday to Friday, 9:00am – 4:30pm (EST)

    Tips for traveling with a bleeding disorder

    If you are planning any type of travel, there are some important things to remember.

    1. Ensure that you call your local clinic in advance to inform them of your travel plans. Staff will assist in arranging appropriate treatment supplies for you to bring with you. Many countries do not have access to the treatment products that we have in Canada and if they were available they probably would be very expensive. Also, most countries have only limited supplies and would not be expected to use their supply on travelers.

    The clinic will supply you with a travel letter. which will be needed for security staff at your port of exit or entry, explaining why you are carrying treatment products, prescribed drugs, needles, syringes etc., and the serious implications of not having them immediately at hand.

    2. When traveling by air, ensure you are carrying your own treatment products, treatment equipment, on-board the aircraft as hand baggage. This will allow you to present them quickly to security and customs, if requested. There are risks of loss, breakage, and of temperature variations potentially affecting treatment products if stowed in the aircraft hold. A small gel pack or frozen juice box in an insulated lunch bag is usually acceptable to security to keep your product cool if necessary.

    3. Always wear medical identification information and bring your Factor First Card.

    4. It is not recommended that you travel alone but in the event that your do, it is important to connect with some one during your travels to inform them of your condition. This will be vital in the event that you are injured and can not speak for yourself.

    5. Medical insurance should be checked well in advance of departure. You may need extra time to deal with pre-existing conditions.

    6. It is recommended that you do your homework before traveling to identify the nearest Hemophilia Treatment Centre to your destination. This information can be found on World Federation of Hemophilia.
     
    7. If you need treatment while traveling, telephone the treatment centre nearest you, using the numbers listed in the WFH's Passport Directory, before seeking treatment.

    8. National hemophilia organizations can also be a source of assistance if needed while traveling.

    If you have any questions or concerns, contact your local Hemophilia centre.

    - article written by Trudy Sale, RN Southern Alberta Rare Blood and Bleeding Disorders Clinic

    Related resources
    Bon Voyage! Traveling with a bleeding disorder (Canadian Hemophilia Society)
    Travel tips for bleeding disorder communities (Hemophilia Federation of America)

    Does Your Child Qualify For A Wish?

    The Alberta and North West Territories Chapter of the Children’s Wish Foundation has been granting wishes in Alberta since March of 1987, with over 1,600 wishes granted so far.

    The Foundation focuses on being the “Best in Class” organization of its kind in Canada, with special care paid to granting a qualifying child’s single most heartfelt wish.  Children have met their heroes, taken magical family vacations, and had their lives changed by the generosity of the Foundation and its sponsors, partners and donors.

    Living with a bleeding disorder is hard: treatments, taking time off from work or school, missing out on activities with your friends, and far reaching health implications.

    Children living with Hemophilia are frustrated and scared about what their condition means for them during their childhood, and for the rest of their lives.  That stress can take the joy out of being a child. It is the goal of the Children’s Wish Foundation to help children suffering from all forms of serious health problems find the joy of childhood again. Following their vision that:

    “Every child enjoys the best quality of life possible including the experience
    of laughter,  shared joy and memories with important people in their lives”


    Are children with Hemophilia eligible?

    The Children’s Wish Foundation has criteria for determining if a Hemophiliac child is eligible. Hemophilia patients between the ages of 3-18 years old who are Canadian residents and who are transfusion dependent for one year or more (minimum of 12 transfusions during that year). Children who receive factor replacement 3 times per week may also qualify.

    The best way to determine if the child you are thinking of is eligible is to contact the Children’s Wish Foundation and ask. They will gather some information from you regarding that child’s situation and reach out to their consulting physician for some additional information.

    How to apply?

    Wishes can be sent in by anyone who knows a child suffering from a serious illness. That can include a parent, friend, family member, Doctor, Social Worker, and more.

    To get the process started contact the Alberta and N.W.T. Make a Wish Chapter directly:
    Jenna Rego
    jenna.rego@childrenswish.ca
    587-221-0062 (Phone)
    1-800-267-9474(Toll Free)

    Related resources
    Make a Wish Foundation

    World Hemophilia day - April 17


    April 17, 2015


    To support any events you may be planning to create awareness on World Hemophilia Day, the CHS will provide materials for you to use.

    CHS Available promotional materials to order

    (WFH) World Federation of Hemophilia resources


    Past World Hemophilia day events

    Edmonton High Level bridge will be lit up in red
    The CHS Alberta Chapter is proud to announce that the Edmonton High Level Bridge will be lit up in red in honor of World Hemophilia Day this year.








    Video: Information on bleeding disorders

    April 2013
    Video made in Edmonton

    Information on bleeding disorders










    Commemoration of tainted blood tragedy - Tree Ceremony - September 2014

    September 15, 2014
    Goldeye, Nordegg Alberta

    On a sunny September afternoon members of the CHS Alberta Chapter gathered at one of our most beloved spots in Nordegg Alberta at Goldeye Retreat in the Rocky Mountains. This spot was selected to plant a commemorative tree to honour those whose lives and families are affected by tainted blood.

    The ceremony included an address by Craig Upshaw, president of National CHS. A moment of silence was followed by members young and old tying red ribbons in memory of lost loved ones. This tree is part of a “living forest” which stands in memorial all around our country.

    Thank you to all the volunteers who helped to plan and implement this wonderful ceremony.

    Timeline of Canada's tainted blood scandal
    Commemoration of the Tainted Blood Tragedy


    Laura Young – Grand-prize winner from Alberta for the Pfizer 'Take a Happy Break' contest 2014

    Pfizer Take a Happy Break
    Laura Young – Grand-prize winner from Alberta

    The story of Laura and Brandon Young
    Brandon Young was just a few months old when he was diagnosed with hemophilia, which came as no surprise to his mother Laura, who is a carrier of the hemophilia gene and who had a brother with the condition. At the time of diagnosis, Laura was provided with helpful resources, especially with regards to blood safety, from nurses who provided counsel for the Young family so that Brandon could have a normal childhood.

    But it was Brandon’s outlook on his condition that made the most difference, and as a young boy he easily made friends with other boys with hemophilia and participated in activities that were safe and enjoyable – such as cycling and being outdoors. Brandon’s outlook on hemophilia has always been and continues to be positive and proactive. For example he learned to self-infuse at the age of 10 because he wanted more control over his health.

    “Brandon once said to me, ‘It’s only hemophilia mom, I could be allergic to peanuts’,” said Laura. “Overcoming limitations has been difficult at times, and now that Brandon is driving, is a working teenager and in school, he’s not around as often. We have to trust that he is taking care of his well-being. Luckily, he has not known many bleeds.”

    Laura is involved with her community through social events for moms and speaks with families to share experiences on raising a child with hemophilia. When she saw the Take a Happy Break contest posted on the CHS Facebook page, Laura decided to use it as an educational tool within her local community to create dialogue around bleeding disorders and fundraise for her provincial chapter.

    “Our contest entry created a lot of discussion in our community and Brandon encouraged many of his friends to become involved,” said Laura. “People naturally asked what the contest was about and why we had entered, and Brandon shone a light on the hemophilia community. He is becoming more involved with others who have bleeding disorders and I couldn’t be more proud, knowing that he’s a role model for young boys.”

    By getting the community involved in their contest entry, Laura and Brandon came in first place in the Pfizer Take a Happy Break contest and were awarded $3,000 for a personal improvement project which they used as a family to get closer to nature, learning how to take care of the Earth, and seeing wildlife for the first time.

    “I hope Brandon continues to travel the path that he’s on – he’s happy, healthy and always looking forward to the next adventure. With this outlook, I know he can achieve anything.”


    Teachers convention Edmonton - February 5 & 6, 2015

    February 5 & 6, 2015
    Shaw Conference Center, Edmonton

    A team of nurses and Alberta Chapter volunteers set up a booth at the Edmonton Teachers convention to create awareness of bleeding disorders. A nurse from the Edmonton clinic, Roxanne Seiferman-Nelson, participated and answered teachers questions.

    Reaching out to our children's teachers is a crutual part of educating others. Teacher's can become more aware of bleeding disorders and take away information they can refer back to.

    Thanks to our nurses and Alberta Chapter members for volunteering again this year for this great cause.

    Meet and Greet at the U of A Hospital - June 11


    June 11, 2014

    The Alberta Chapter had a wonderful opportunity to participate in a meet and greet with the staff and students at the University of Alberta Hospital. The event was organized by the Network of Rare Blood Disorder Organization which the Alberta Chapter belongs to.


    Network of Rare Blood Disorder Organization





    Past events

    Events and conventions CHS Alberta Chapter attended in the past:

    Edmonton Teacher's convention
    February 27 & 28, 2014

    A team of nurses and Alberta Chapter volunteers set up a booth at the Edmonton Teachers convention to create awareness of bleeding disorders. Two nurses from the Edmonton clinic, Bonny Granfield and Roxanne Seiferman-Nelson, participated and answered teachers questions.

    Edmonton Women's show

    May 2013

    Calgary Women's show

    October 2012