Calling Hemophilia B Patients!

 

MD Analytics Inc., an independent market research firm, is conducting a study to better understand the experiences of patients with Hemophilia. As part of the research, they are looking to speak with patients with Hemophilia B and their caregivers. Information collected from this research will be used to better understand patient needs and identify potential gaps in patient support.

Please be assured that your participation as well as your responses will remain completely anonymous and confidential, and any results of this research will only be shared anonymously via summarized data.

The study involves a 60-minute online zoom interview regarding your experiences of living with Hemophilia and your opinions on your current and previous treatment. You will need access to a computer with internet during this time.

In appreciation for your contribution, you will receive a monetary incentive upon qualification and completion.

If you are interested, please visit the MD Analytics consent page, and then to further information about this research opportunity.

If you have any questions, please contact Diana at research@mdanal​​​ytics.com, quoting “study 22072” in the email.

MD Analytics Inc.’s Privacy Policy 

 

 


Hemophilia Ontario Volunteer Awards

 

 

Each year at the Annual General Meeting Hemophilia Ontario recognizes dedicated volunteers, staff and health care providers who have made a significant contribution to the bleeding disorder community of Ontario.

The Annual General Meeting will take place in May 14th 2022. The next deadline for submitting nominations is March 31st. If you know of a volunteer you would like to nominate please follow the link below to submit a nomination form.

Volunteer Awards


Hemlibra Access

 

After a long campaign and many challenges, the Quebec chapter of the Canadian Hemophilia Society and the Canadian Hemophilia society have succeeded in making Hemlibra available to all non-inhibitor severe Hemophilia A patients, as well as all clinically severe cases irrespective of factor level threshold.

We congratulate them on their victory and look forward to working together to continue to increase access to Hemlibra for all people with Hemophilia A in Canada.

Please see the Canadian Hemophilia Society announcement here.

 


Photos Needed!

 

 

Hemophilia Ontario is looking for individuals and families who are willing to share photos for inclusion on a Sanofi Genzyme website outlining the results of a large patient survey. This website will be shared with the larger hemophilia community.

We are specifically looking for photos showing the different life stages of living with hemophilia.

If you are interested in sharing your photos, please contact Byron James at:

bjames@hemophil​ia.on.ca for more information.

 

 


Calling Hemophilia A & Hemophilia B Patients

 

 

MD Analytics Inc., an independent market research firm, is conducting a study to better understand the experiences of patients with Hemophilia. As part of the research, they are looking to speak with patients with Hemophilia A or B and their caregivers. Information collected from this research will be used to better understand patient needs and identify potential gaps in patient support.

Please be assured that your participation as well as your responses will remain completely anonymous and confidential, and any results of this research will only be shared anonymously via summarized data.

The study involves a 60-minute online zoom interview regarding your experiences of living with Hemophilia and your opinions on your current and previous treatment. You will need access to a computer with internet during this time.

In appreciation for your contribution, you will receive a monetary incentive upon qualification and completion.

If you are interested, please click on the link where you will be guided to the MD Analytics consent page, and then to further information about this research opportunity.

 

If you have any questions, please contact Diana at research@mdanal​ytics.com, quoting “study 22072” in the email.

To view MD Analytics Inc.’s privacy policy visit: www.mdanalytics.com/privacy-policy

 

 


Aging Against All Odds: USC Social Work Professor Investigates Forgotten HIV Population

December 17, 2021 / By Michele Carroll

The first generation of people with hemophilia to live past 50 are aging in a world that doesn’t know what to do with them.

“I wasn’t expecting to be alive past 12, then 15, then 35-ish, and now I’m a fluffy 50 and having to deal with a system that’s not ready for me,” said Bobby Wiseman, who has severe hemophilia and is HIV-positive. “We weren’t supposed to get old.”

Continue reading here.


We Want To Hear Your Story!

 

We’re Looking for Stories to Share! story

 

As announced in 2021, Hemophilia Ontario is creating a new bleeding disorders website designed for women and people who menstruate. We surveyed the community to ensure the website focuses on the most relevant information and updated resources which includes video and audio content, research articles and much more!

As part of the website, we thought it would be powerful to share the stories of women and people who menstruate who are part of our community. If you are interested in sharing your story on this exciting new website, please contact Natalie Philbert at nphilbert@hemop​hilia.on.ca.

 

 

 


Student Job Opportunity!

 

Hemophilia Ontario is offering a studentship opportunity to assist us with social media coordination. This position is open to students in college or university.

For more information, please see the job description below:

Social Media Coordinator (Student/Volunteer Role)

Job Description: 

Hemophilia Ontario is a non-for-profit patient advocacy organization committed to improving the health and quality of life for all people with inherited bleeding disorders, and to find a cure.

The team is currently offering a role for one student as a Social Media Coordinator. The volunteer position will be a 8 month tenure offering a $1,000 honorarium for an estimated 5 hours of work a week. The role offers students with leadership experience through working with a non-for-profit committed to the health and interests of the bleeding disorders community. The work will be composed of:

– Researching and composing 1-3 stories a week related to bleeding disorders for the organization

– Assisting with social media posts

– Reposting scheduled social media content on LinkedIn

– Engaging with the Hemophilia Ontario staff to develop advocacy pieces for public posting

 

This role will directly report to the Manager of Camp Programs & Communications and indirectly to the Executive Director.

Requirements: 

– Must be an Undergraduate, Graduate, or College student

– Preference will be given to students with prior experience of engagement with the bleeding disorders       community and/or passionate on the advocacy of the treatment or management of bleeding disorders

– Preference will be given to students intending to pursue a career in communication, social media, and the health sciences

– Preference will be given to students with experience in social media coordination

 

Interested applicants can send their resume to Alex McGillivray, Manager of Camp Programs & Communication at amcgillivray@he​mophilia.on.ca.​