November 19th and 20th
On behalf of the World Federation of Hemophilia (WFH), we kindly invite you to participate in the Global Summit on Women and Girls with Inherited Bleeding Disorders to be held virtually November 19 and 20, 2020. If interested, please register here.
Event Registration / Inscription à l’événement
This session is intended for Canadian patients and caregivers only.
Learning Objectives:
Cette séance s’adresse uniquement aux patients et aux aidants canadiens.
Objectifs d’apprentissage :
CADTH Webinar
Non Pharmacological Interventions
for Chronic Non-Cancer Pain: Physical Activity
Wednesday September 23, 2020
2:00pm – 3:00pm EST
Because of the prevalence and burden of chronic pain, health care providers are in search of the best multifaceted approach for treatment knowing that relying on opioids alone can be ineffective and carries substantial risks. Join CADTH for a webinar on the current evidence on physical activity for chronic, non-cancer pain. The target audience for this presentation is nurses, physicians, allied health professionals, researchers, educators, administrators, and health sciences students. All participants are welcome.
Speakers:
Register here
SWOR Family Community Day
Hemophilia Ontario is hosting our first physical program of 2020 in the SWOR region! We are hosting an afternoon at Boler Mountain on October 17, 2020 at 1pm.
In light of our area being moved to stage three in the COVID protocol and the ability of Boler Mountain through its expansive outdoor facilities to be able to meet and exceed COVID protocols we are looking forward to welcoming you to what promises to be a fantastic time for the entire family.
Itinerary
October 17th
1:00pm Arrival
You will sign in at the registration table then head over to Boler Mountain staff to pick up your package, which will include wristbands and bbq lunch tickets. You will also complete a waiver. Then you are free to go and enjoy your day. Check out the link to see all that Boler Mountain has to offer for adults, children and families, including obstacles courses designed for all ages and zip lines! https://www.bolermountain.com/
Boler Mountain is practicing the following COVID-19 Protocols for their Treetop Adventure Park:
There is no cost for this event. Please email nphilbert@hemophilia.on.ca to register. Registration will close October 5th or when we hit capacity, whichever happens first.
Webinar presented by Kay Decker.
A tool to help personalize your Prophylactic Therapy. Prophylactic replacement with factor concentrate is the optimal treatment for people with severe hemophilia to avoid or minimize bleeding. This ultimately prevents or reduces joint disease, and improves life expectancy and QOL towards values matching those in the normal population.
Led by content leads, Alok Srivastava, MD, and Glenn Pierce, MD, PhD, WFH Vice-President, Medical, the 3rd edition of the World Federation of Hemophilia (WFH) Guidelines for the Management of Hemophilia has been published! This invaluable resource offers up-to-date guidance and practical recommendations on the diagnosis and management of hemophilia, including the management of musculoskeletal complications and inhibitors, updates to laboratory diagnosis and genetic assessments, as well as new recommendations on outcome assessments.
Informed by the best available evidence and supplemented with expert opinion and patient preference, the more than 300 practical recommendations in these guidelines were developed by consensus using the “Trustworthy Consensus-Based Statement” process to ensure reliable guidance. The high-quality, evidence- and expert-informed treatment guidelines offer a means to bridge the gap between treatment practices and care around the world. They offer a set of practical recommendations intended to improve the quality of care globally, promote effective clinical interventions and decrease variations in clinical practice.
Download the 3rd edition of the WFH Guidelines for the Management of Hemophilia here.
The Women’s With Bleeding Disorders Web Series is Back!
We are offering two more sessions with new topics and new speakers!
August 8th 10am – 12pm – Women With Bleeding Disorders – Carriers Session
Speakers: Megan Chaigneau, RN, BSc, MSc, Bleeding Disorders Nurse Coordinator from the Southeastern Ontario Regional Inherited Bleeding Disorder Program, Pam Wilton, a long time volunteer of Hemophilia Ontario with a special interest in women with bleeding disorders and patient advocacy.
August 15th 10am – 12pm – Women and Aging with a Bleeding Disorder
Speaker – Judy Perrier, a retired high school teacher who was diagnosed with Type 1 VWD in the early 80’s, after two Caesarean sections and a hysterectomy. Judy is a member of Hemophilia Ontario.
To register, contact Natalie Philbert at 1-888-838-8846 ext. 18 or nphilbert@hemophilia.on.ca
Check out some of the links below:
Complications from COVID-19 May Depend on von Willebrand Factor in the Blood
by St. Petersburg State University
https://medicalxpress.com/news/2020-07-complications-covid-von-willebrand-factor.html
The World’s Largest Study on the Impact of Haemophilia on Cognition and Behaviour in Children and Young Adults Reveals Benefit of Decades of Improving Care
by Novo Nordisk
Comparing Factor Use and Bleed Rates in US Hemophilia A Patients Receiving Prophylaxis with 3 Different Long-Acting Recombinant Factor VIII Products
Clinical Brief by AMJC
Major Breakthrough on Chromosome Sequencing Paves the Way for Hemophilia Cure
by Tom Bawden
https://inews.co.uk/news/science/chromosome-sequencing-haemophilia-cure-537580
On Thursday July 30 at 10:00am (EST), the World Federation of Hemophilia (WFH) will be hosting a 75-minute webinar for people with bleeding disorders to address concerns related to maintaining joint health during the COVID-19 pandemic.
Please submit your questions to programs@wfh.org in preparation for the webinar.
Register at http://ow.ly/bWbD50AGgot to participate in this upcoming webinar!
A healthcare company is conducting market research with patients who are 18 years and older currently taking factor 8 replacement products.
If you are interested, please contact the agency that is conducting the research at dss@impetusdigital.com by Wednesday, July 15th with the subject line “Hemophilia Market Research”. The agency will then contact you directly with all the details and you can decide whether or not to participate.
Participants will be compensated.
