Hemophilia Ontario brought it’s community back together for a full week at Camp Wanakita – August 8 -14 – for a infusion training and family camp. We were proud to host 40 Families for a total of 180 participants!
Stay tuned for photos and videos of the amazing week spent at camp!
Montreal, June 23, 2021 – Ferring Canada, in discussions with the Canadian Hemophilia Society, has stated that supply of DDAVP, the 15 mcg/mL formulation of desmopressin, injected subcutaneously, for the treatment of mild hemophilia A, Type 1 von Willebrand disease and platelet disorders, will resume in “one or two months.” The shortage was apparently caused by shipping issues. Ferring had earlier cited a global manufacturing issue to explain the stoppage in supply to Canadian pharmacies.
The worldwide production of Octostim Spray, inhaled through the nose, remains stopped and is not expected to resume until 2023.
Patients who use either of the formulations should contact their treatment centre for advice on alternatives.
For more information, please visit the Canadian Hemophilia Society.
Hemophilia Ontario’s Member Support and Services is always here to help answer any questions you may have. Feel free to contact Bojan Pirnat at bpirnat@hemophilia.on.ca or 647-354-5660.
Hemophilia Ontario’s scholarship and bursary program is named in honour of John Plater, a tireless advocate for people with bleeding disorders and those who were affected by the tainted blood tragedy.
John was born in 1967, and had severe hemophilia A. He contracted HIV from tainted blood, and went on, with many others, to draw attention to the issue of tainted blood. His efforts contributed to the establishment of the Krever Inquiry and compensation for those who were infected with HIV and Hepatitis C. John graduated from Osgoode Hall Law School in 1998, and maintained a legal practice assisting those affected by the tainted blood tragedy.
John served our community through involvement with the Canadian Hemophilia Society and Hemophilia Ontario. He served on many significant committees, including as co-chair of the Ministerial Advisory Council on the Federal Initiative on HIV/AIDS, chair of the Ontario Hepatitis C Task Force and chaired the HIV/AIDS Community Advisory Panel of St. Michael’s Hospital. He was active at Thornbury First Baptist Church, serving as Moderator and chair of the Deacons. John passed away from complications related to HIV/AIDS in 2012.
John was a mentor, friend, leader and hero to many in the bleeding disorder community. This program recognizes and celebrates John’s commitment to our community and to helping others.
June 29, 2021 5:30-7:00pm
Please join us for Hemophilia Ontario’s first webinar on Pain and Pain Management with Dr.Norman Buckley, one of Canada’s leading experts in pain research and care. Pain is one of the most relevant and least discussed issues for people with bleeding disorders, and it’s time we began to talk about it. Pain is an issue faced by people with bleeding disorders of all ages, and we invite you all to take part in this event.
At the webinar you can expect to hear a presentation by Dr.Buckley, as well as to participate in an extensive Question and Answer period. Dr.Buckley’s clinical work is focused on chronic pain management at the Michael G. DeGroote Pain Clinic, McMaster University Medical Centre, and he is the scientific director of the Michael G. DeGroote Institute for Pain Research and Care. Dr.Buckley is committed to improving health outcomes for Canadians living with chronic pain.
Camp will be taking place from Sunday August 8 – Saturday August 14, 2021. This is the only week available to Hemophilia Ontario. Please note there are a limited number of spaces available, with a maximum of 6 people per family group/cohort.
Registration is currently open to families on a first come, first serve basis until spaces are filled, or Friday June 18, 2021 (whichever comes first).
The cost of attending this week at camp is $200.00 per family. Financial assistance options are available if needed.
Information on safety measures and COVID protocols will be sent out in the coming month and prior to your family’s arrival at camp.
If you have any questions or concerns, please contact Alex McGillivray at amcgillivray@hemophilia.on.ca or 1-888-838-8846 ext. 14.
Thank you and we hope to see you at camp!
Check out the first webinar of its kind in Ontario, the Sexual Health and Bleeding disorders webinar brought together a panel that includes both healthcare and patient perspectives to talk about common physical, mental, and emotional aspects of living with a bleeding disorder and sexuality.
Our speaker panel: Greig Blamey PT,CHT, Amy Griffith, and Chad White had a lively conversation on all things sex and bleeding disorders.
Vaccine Safety and Guidelines,
Provincial Rollout Strategy, and Bleeding Disorders and COVID-19
You can now check out the recording of Hemophilia Ontario’s April 28th COVID vaccine webinar.
Jerry Teitel, Clinic Director of St. Michael’s Hospital Bleeding Disorders Program delivers a presentation update on what we know so far about COVID-19 and bleeding disorders, as well as the safety and efficacy of COVID-19 vaccines in people with bleeding disorders, joined as well by David Gogolishvili, a Senior Lead, Knowledge Synthesis and Rapid Response Service at the Ontario HIV Treatment Network to discuss the long term outlook of vaccination in Canada and the world.
Historically, women have not received adequate attention for the spectrum of bleeding disorders they live with. Over the past few years, Hemophilia Ontario has recognized the need to see women be made a priority within the bleeding disorder community, and the Women with Bleeding Disorders Program was formed. Thanks to its popularity in 2020, our educational speaker-based web series is back and here to stay. Hosted again by Natalie Philbert and Amy Griffith, this year, we’ll focus on women’s overall wellness in both a 5-part web series and in-person summer event. The first online session will be June 15th at 5pm and the topic will be Treatments and Products.
Register now to join on us for this amazing webinar!
WEBINAR: KEY ISSUES IN COVID-19 VACCINES FOR PWBDs
Wednesday June 2, 2021 @ 9am EST
The World Federation of Hemophilia invites your to attend this webinar that will address concerns related to COVID-19 treatment and vaccination for people with bleeding disorders.
Simultaneous interpretation will be offered in Spanish, French, Russian and Arabic.
