A six week educational support group for friends, family and partners of people living with HIV. To register contact rcumming@actoronto.org.
Celebrate World Hemophilia Day on April 17th with Hemophilia Ontario!
You’re invited to our celebration of World Hemophilia Day. We’ll be hosting Deirdre Tetzlaff, Physiotherapist from SickKids Hospital who will be presenting on Joint Health for People Living with Bleeding Disorders. We’ll also be celebrating with a magic show by Magician Tyler Fergus!
When: April 17th, 2021 from 1pm – 3pm
Where: Online presentation – a link will be sent to those who register.
Please join us for what promises to be a MAGICAL experience!
Hemlibra Now! Webinar
An informational session and a call to action to the community to help us make Hemlibra available for all severe Hemophiliacs in Canada.
Featured on the webinar were: Dr.David Lillicrap, Department of Pathology & Molecular Medicine, to present on Hemlibra and answer questions. We were also joined by Craig Upshaw, Chair of the Blood Safety and Supply Committee and former President of the Hemophilia Society, to speak about the importance of advocacy for Hemlibra. Arslan Baig, a parent of a young boy with Hemophilia, joined us to tell his family’s story about how Hemlibra changed his son’s life.
Final comments were delivered by Cameron Peters, President of Hemophilia Ontario.
Hemlibra Now!
Please join us for our informational session on all things Hemlibra and a call to action to the community to help us make Hemlibra available for all severe Hemophiliacs in Canada.
Joining us will be Dr.David Lillicrap, Department of Pathology & Molecular Medicine, to present on Hemlibra and answer your questions. We will also be joined by David Page, Medical Director for the Canadian Hemophilia Society to discuss Hemlibra advocacy, as well as patient speakers to share the effect Hemlibra has had on their lives.
Funding For Children, Youth and Students
Ontario Government Expanding Funding for Children, Youth and Students
(UPDATED INFORMATION JANUARY 2021)
In November 2020, the Ontario government announced financial support for people up to and including age 12 and people up to and including age 21 with special needs. Funding is now also available for people up to and including those in Grade 12 whether they are currently in school or not, including people in secondary school aged 18 or over.
Parents and guardians, as well as secondary students aged 18 or over, can apply for a one-time payment of:
- $200 for each person up to and including those in Grade 12
- $250 for each person up to and including age 21 with special needs
A person with special needs is:
- any person reported to be receiving special education programs or services by their school board
- any person enrolled in licensed child care reported to be receiving special needs funding or support
- any person identified as having a special need
Note that the government has indicated that people who are identified as gifted but who do not have any other special needs are not considered to have special needs under this program.
The new deadline to apply for funding is February 8, 2021.
- More information about the funding can be found here.
- People can apply for the funding here.
- See here for a pdf of this posting.
Hemophilia Ontario also offers financial support, follow this link for more information.
Gene Therapy: the myths, the facts, the future – February 10th
Join us and Dr. Lindsey A. George for the webinar,
“Gene Therapy: the myths, the facts, the future.”
Dr. George is a Tenure Assistant Professor of Pediatrics for the Perelman School of Medicine at the University of Pennsylvania.
Dr. George’s basic and clinical research interests are in the development of novel therapeutics for hemophilia. Her basic science laboratory studies the molecular basis of coagulation, and she is the principal investigator of ongoing hemophilia A and B gene therapy trials.
FAQs Regarding the COVID-19 Vaccine
FAQs Regarding the COVID-19 Vaccine A Message from the AHCDC
The evidence regarding COVID-19 is evolving rapidly. This document was prepared on January 11, 2021 in consultation with experts in infectious disease, and allergy & immunology. The following statements may be subject to change.
Please contact your local health care provider and refer to local public health guidance for up-to-date information.
Is the COVID-19 vaccine safe for someone with a bleeding disorder?
Yes, it is safe for people with bleeding disorders to receive the vaccine. Please let your health care provider know that you have a bleeding disorder prior to the injection. Encourage your health care to use a smaller gauge needle, if possible, and to apply 10 minutes of pressure after the injection. If you are on prophylaxis with factor concentrate, you should time your prophylaxis with the day of your vaccine injection. If you treat on-demand but have a history of severe bleeding, you may need a treatment with factor concentrate before the vaccine injection. Please contact your bleeding disorder team.
Will the COVID-19 vaccine affect my candidacy for future hemophilia gene therapy?
No, the COVID-19 vaccine technology is very different from gene therapy and should not affect your eligibility.
Does my bleeding disorder treatment increase my risk of allergic reactions?
People with a history of severe allergic reactions to PEG (polyethylene glycol) or PEG- containing medicines (e.g. Adynovate, Jivi, Rebinyn) should speak with their health care provider to determine which vaccine is most appropriate. Such allergic reactions are very rare. For more allergy-related information, visit: https://foodallergycanada.ca/campaign/covid-19-and-food-allergy/.
Do immune suppressive medicines and/or immune tolerance induction therapy decrease the effectiveness of the vaccine?
Immune suppressive medicines (e.g. anti-CD20 monoclonal antibodies, corticosteroids) may interfere with the effectiveness of any vaccine. Immune tolerance induction therapy should not interfere with vaccine effectiveness. People on immune tolerance induction therapy and on immune suppressive medicines can still receive the vaccine.
Disclaimer: Hemophilia Ontario and The AHCDC assumes no responsibility or liability arising from any error or omission or from the use of any information contained herein. You must not rely on the information in this document as an alternative to medical advice from your health care provider.
Support the James Kreppner Memorial Scholarship
James Kreppner was a lawyer and long-time volunteer and member of the CHS Board of Directors and a highly respected, articulate and exemplary activist who passed away in 2009 due to HIV and hepatitis C-related complications.
To honour James’ memory, the Canadian Hemophilia Society Scholarship and Bursary Program was renamed the CHS James Kreppner Memorial Scholarship and Bursary Program as a tribute to James’ dedication, intelligence and commitment to the CHS and community service. This scholarship program has made a difference to young volunteers and leaders at the CHS.
We need your help and concrete support to be able to give a scholarship in 2021 and continue a legacy of service and community support.
Donate HERE
Members survey is now live!
We need you to help us help you. Given the realities of a COVID world we have prepared a survey that will enable us to respond to this changing environment. This will assist in the way that we support and develop programs now and in the future for our bleeding disorder community. We are calling on all members of the community to please take some time, (10 -15 Min.) to complete this survey. The information provided will be crucial for the development of our strategic plan in 2021 that will define the organizations priorities for 2022 – 2025.
Every person completing the survey will receive a $20.00 Tim Hortons gift card, and will be entered into a draw for a $1,000.00 Visa card. We need this “Please help us help you”. Survey closes November 20th. Please don’t wait, do it now. On behalf of the board and staff of Hemophilia Ontario we are counting on your support, thank you in advance for your participation.
Check your email for Hemophilia Ontario’s latest update, which contains the link to our member & supporter survey.
Telehealth for Haemophilia Comprehensive Care
Telehealth for delivery of haemophilia comprehensive care during the COVID‐19 pandemic
, , , et al. Telehealth for delivery of haemophilia comprehensive care during the COVID‐19 pandemic. Haemophilia. 2020; 00: 1– 7. https://doi.org/10.1111/hae.14156
The COVID‐19 pandemic caused an unprecedented impact to haemophilia healthcare delivery. In particular, rapid implementation of telehealth solutions was required to ensure continued access to comprehensive care. Check out the article here.
