HAE Canada

HAE Canada HAE Canada is a patient advocacy organization that connects people living with Hereditary Angioedema. Thank you for visiting HAE Canada's page.

When interacting on this page, you agree to the following conditions:

1. HAE Canada reserves the right to delete any post for any reason, especially those that contain inappropriate content, advertisements, or spam. Violators of this condition may be blocked from posting.
2. By posting on HAE Canada's page, you consent to HAE Canada sharing your posted information in other ministry-relat

When interacting on this page, you agree to the following conditions:

1. HAE Canada reserves the right to delete any post for any reason, especially those that contain inappropriate content, advertisements, or spam. Violators of this condition may be blocked from posting.
2. By posting on HAE Canada's page, you consent to HAE Canada sharing your posted information in other ministry-relat

Operating as usual

Lanadelumab (TAKHZYRO), a treatment to routinely prevent attacks in patients with HAE Type I or II who are 12 years old ...
09/14/2021

Lanadelumab (TAKHZYRO), a treatment to routinely prevent attacks in patients with HAE Type I or II who are 12 years old and up, was recently added to Nova Scotia’s drug formulary. To access this treatment, we recommend you speak with your HAE specialist or speak to a representative from Takeda’s OnePath program. You can also find details in Nova Scotia’s Pharmacare News.

This is wonderful news for eligible HAE patients living in Nova Scotia. We’d like to extend a huge thank you to both Takeda Canada and the Nova Scotia government who worked hard to ensure HAE patients have access to this treatment.

The NS Pharmacare news bulletin is posted on our website: https://haecanada.org/lanadelumab-added-to-ns-formulary/

Lanadelumab (TAKHZYRO), a treatment to routinely prevent attacks in patients with HAE Type I or II who are 12 years old and up, was recently added to Nova Scotia’s drug formulary. To access this treatment, we recommend you speak with your HAE specialist or speak to a representative from Takeda’s OnePath program. You can also find details in Nova Scotia’s Pharmacare News.

This is wonderful news for eligible HAE patients living in Nova Scotia. We’d like to extend a huge thank you to both Takeda Canada and the Nova Scotia government who worked hard to ensure HAE patients have access to this treatment.

The NS Pharmacare news bulletin is posted on our website: https://haecanada.org/lanadelumab-added-to-ns-formulary/

The Canadian Organization for Rare Disorders (CORD) has put together an amazing tool to help patients, caregivers and fa...
09/08/2021
Electon Toolkit

The Canadian Organization for Rare Disorders (CORD) has put together an amazing tool to help patients, caregivers and family members navigate the 2021 federal election.

Two huge issues: the National Rare Disease Strategy and Federal Drug Pricing Reforms make this a very important time for rare disease patients.

We encourage everyone in the HAE community to please click below to learn about the 2021 Election Toolkit for Patients.
Thank you 😊

Canadian Organization for Rare Disorders

2021 Election Toolkit for Patients How to use this Rare Disease election toolkit This election toolkit is designed to provide ideas and help patients, caregivers and family members that are part of the rare disease community to navigate the 2021 federal election and ensure that their voices ...

While in British Columbia for HAE Canada business, Jacquie Badiou (HAEC President), along with Lorraine Coumont (Pacific...
09/08/2021

While in British Columbia for HAE Canada business, Jacquie Badiou (HAEC President), along with Lorraine Coumont (Pacific Regional Director) enjoyed a lovely lunch with two fantastic HAEC volunteers: Jacob Collins, the Canadian Representative with HAE International's Youth Advisory Group and Karen Wakita. HAE Canada is very lucky to have both of these talented and kind volunteers and we are excited for our members to get to know Karen and Jacob better.

Speaking of Jacob... if you know of a young HAE patient who has some questions about health and safety as they return to in-class learning - please sign up for the Back-to-School Online Meet Up! Jacob is helping facilitate this helpful discussion on September 11 at 7:00pm (Central European Time).

For details visit:
https://youngsters.haei.org/events/back-to-school/

While in British Columbia for HAE Canada business, Jacquie Badiou (HAEC President), along with Lorraine Coumont (Pacific Regional Director) enjoyed a lovely lunch with two fantastic HAEC volunteers: Jacob Collins, the Canadian Representative with HAE International's Youth Advisory Group and Karen Wakita. HAE Canada is very lucky to have both of these talented and kind volunteers and we are excited for our members to get to know Karen and Jacob better.

Speaking of Jacob... if you know of a young HAE patient who has some questions about health and safety as they return to in-class learning - please sign up for the Back-to-School Online Meet Up! Jacob is helping facilitate this helpful discussion on September 11 at 7:00pm (Central European Time).

For details visit:
https://youngsters.haei.org/events/back-to-school/

Do you, or a young person in your life, have a few jitters about heading back to school? You are not alone! The HAEi You...
08/30/2021
Back to School

Do you, or a young person in your life, have a few jitters about heading back to school? You are not alone!
The HAEi Youngsters have organized an Online Meet Up: Back to School for youth between 12 and 25 years old to discuss how best to return to the classroom.

Please click the link below to sign up for this great opportunity.

We are proud that Jacob Collins, who represents Canada on the Youth Advisory Group, is one of the facilitators. Way to go Jacob!

Hi everyone, We are happy to let you know the next HAEi Youngsters Online Meetup is a reality and is going to be on 11, September 2021 at 19:00 (7:00 pm) Central European Time!   About this meeting For many of us, this fall will be the first time back in school for full days, 5 days a week since

07/09/2021
As COO, I would be remiss if I did not take time before the summer break to properly thank Jacquie Badiou, the HAE Canad...
07/09/2021

As COO, I would be remiss if I did not take time before the summer break to properly thank Jacquie Badiou, the HAE Canada President, for her leadership and dedication, not to mention huge amounts of her time, to helping all HAE patients in Canada. She brings a wealth of knowledge and experience to the organization, and I am grateful to work with her each day. She is supported by a fantastic Board of Directors who also deserve a big thank you for their hard work and commitment to HAE Canada. This completely volunteer Board, with help from volunteer HAE specialists across Canada, has many accomplishments to be proud of. From helping Canadians gain access to two new treatments (HAEGARDA and TAKHZYRO), to organizing virtual Patient Information Updates, to bringing medical abstracts to national and international conferences - they have a lot to be proud of.

We could not accomplish our goals without our team of talented volunteers across Canada who kindly and generously donate their time and skills to HAE Canada. Thank you to all our volunteers, we appreciate all you have done, and continue to do!

I am very proud to be a part of this wonderful team and look forward to accomplishing our future goals.

- Daphne Dumbrille, COO, HAE Canada

As COO, I would be remiss if I did not take time before the summer break to properly thank Jacquie Badiou, the HAE Canada President, for her leadership and dedication, not to mention huge amounts of her time, to helping all HAE patients in Canada. She brings a wealth of knowledge and experience to the organization, and I am grateful to work with her each day. She is supported by a fantastic Board of Directors who also deserve a big thank you for their hard work and commitment to HAE Canada. This completely volunteer Board, with help from volunteer HAE specialists across Canada, has many accomplishments to be proud of. From helping Canadians gain access to two new treatments (HAEGARDA and TAKHZYRO), to organizing virtual Patient Information Updates, to bringing medical abstracts to national and international conferences - they have a lot to be proud of.

We could not accomplish our goals without our team of talented volunteers across Canada who kindly and generously donate their time and skills to HAE Canada. Thank you to all our volunteers, we appreciate all you have done, and continue to do!

I am very proud to be a part of this wonderful team and look forward to accomplishing our future goals.

- Daphne Dumbrille, COO, HAE Canada

🎉 👏 👉 Congratulations to the Canadian HAE Community! Canadians logged the most steps to win the 2021 Global Walk for a t...
06/01/2021

🎉 👏 👉 Congratulations to the Canadian HAE Community! Canadians logged the most steps to win the 2021 Global Walk for a third time. Thank you very much to all who participated - the efforts of all illustrate why we are so proud of our amazingly engaged Canadian HAE community.

Our membership, including the HAE Canada Board of Directors, continuously entered their steps to ensure Canada remained in the lead. Our energetic sponsors, specifically, CSL Behring Canada and Takeda Canada, each formed teams that added a significant amount of steps throughout the last month. Teams from Red Maple Trials (who create our abstracts and posters) and Yang Medicine, as well as health policy consultant, Bob Bick, all added many steps for Canada. HAE specialists, along with their supportive nursing staff, also found the time to add their steps. Members from the Canadian Organization for Rare Disorders (CORD) also contributed to Canada's steps!

We are so proud of the Canadian HAE community; it is certainly a thrill knowing so many found the time to help keep HAE awareness alive. Thank you, again, to all who participated, we appreciate the engagement and enthusiasm for this amazing initiative.

🎉 👏 👉 Congratulations to the Canadian HAE Community! Canadians logged the most steps to win the 2021 Global Walk for a third time. Thank you very much to all who participated - the efforts of all illustrate why we are so proud of our amazingly engaged Canadian HAE community.

Our membership, including the HAE Canada Board of Directors, continuously entered their steps to ensure Canada remained in the lead. Our energetic sponsors, specifically, CSL Behring Canada and Takeda Canada, each formed teams that added a significant amount of steps throughout the last month. Teams from Red Maple Trials (who create our abstracts and posters) and Yang Medicine, as well as health policy consultant, Bob Bick, all added many steps for Canada. HAE specialists, along with their supportive nursing staff, also found the time to add their steps. Members from the Canadian Organization for Rare Disorders (CORD) also contributed to Canada's steps!

We are so proud of the Canadian HAE community; it is certainly a thrill knowing so many found the time to help keep HAE awareness alive. Thank you, again, to all who participated, we appreciate the engagement and enthusiasm for this amazing initiative.

👏👏👏 Thank you to everyone who added (and is continuing to add!) their steps to the Global Walk in honour of the HAE Day ...
05/21/2021

👏👏👏 Thank you to everyone who added (and is continuing to add!) their steps to the Global Walk in honour of the HAE Day "Let’s Take the Next Step for HAE" advocacy campaign. Canada is doing amazingly well - please help us remain in the lead until the end of the challenge at the end of May. 🚶‍♀️ 🧘‍♀️ 🚴‍♂️ 📚 🏃🏿‍♂️

If you haven't yet joined the Walk, all you need to do is go on the HAE Day 🙂 website (link below), and there you can regularly record the time you spend on physical or wellbeing activities. The website will then convert your activities (which includes anything from walking, to yoga, to painting, to reading even) into steps. It's that easy.

https://haeday.org/

Thank you for helping to raise HAE awareness, one step at a time!

#active4hae

👏👏👏 Thank you to everyone who added (and is continuing to add!) their steps to the Global Walk in honour of the HAE Day "Let’s Take the Next Step for HAE" advocacy campaign. Canada is doing amazingly well - please help us remain in the lead until the end of the challenge at the end of May. 🚶‍♀️ 🧘‍♀️ 🚴‍♂️ 📚 🏃🏿‍♂️

If you haven't yet joined the Walk, all you need to do is go on the HAE Day 🙂 website (link below), and there you can regularly record the time you spend on physical or wellbeing activities. The website will then convert your activities (which includes anything from walking, to yoga, to painting, to reading even) into steps. It's that easy.

https://haeday.org/

Thank you for helping to raise HAE awareness, one step at a time!

#active4hae

Happy HAE Day! We'd love to hear how you celebrated HAE Day :-) today. Did you go for a hike? Did you plant some flowers...
05/16/2021

Happy HAE Day! We'd love to hear how you celebrated HAE Day :-) today. Did you go for a hike? Did you plant some flowers? Make a special meal for your household?

Please visit HAEi's website to learn about what HAEi has been doing since the first HAE Day.
https://haeday.org/hae-international-16-may-2021/

Happy HAE Day! We'd love to hear how you celebrated HAE Day :-) today. Did you go for a hike? Did you plant some flowers? Make a special meal for your household?

Please visit HAEi's website to learn about what HAEi has been doing since the first HAE Day.
https://haeday.org/hae-international-16-may-2021/

🎉 Happy HAE Day Canada! Pop over to HAEi's website to learn how it all started!
05/16/2021

🎉 Happy HAE Day Canada! Pop over to HAEi's website to learn how it all started!

After a lot of planning, the very first hae day :-) took place in 2012 and today 16 May is recognized as the official annual awareness day for HAE 🙌📅📌

hae day :-) unites the HAE community with 16 May as a focus for activities to raise awareness of HAE amongst the general public, healthcare professionals, healthcare decision makers and industry representatives.

Head over to our website to see all the activities, projects and resources launched by HAEi since the first hae day :-) 👉👉 https://haeday.org/hae-international-16-may-2021/

#active4hae #haeday10

Thank you, US HAEA, for this wonderful invitation:👉👉👉The US HAEA community cordially invites our HAE Canada friends to t...
05/15/2021

Thank you, US HAEA, for this wonderful invitation:

👉👉👉The US HAEA community cordially invites our HAE Canada friends to tune in to the 2021 Virtual Summit Series!

The Virtual Summit features 4 live events that take place in May, June, July, and August as well as pre-recorded videos of highly relevant HAE issues! All live events will be recorded and can be viewed along with the pre-recorded videos at your convenience.

The Virtual Summit Series offers “must see” programming that includes:
--Information regarding new HAE therapies on the horizon,
--An expert panel of HAE Physician/Scientists who will answer HAE-related questions,
--Special segments covering
-the latest information on HAE with Normal C1inhibtor,
-HAE in women, and
-Children with HAE.
--An overview of the latest patient-driven research initiatives,
--Sessions targeted especially for the youngest members of the HAE community, and
--Interactive features allowing you to post to our community board and take selfies at our selfie station!

The exclusive live and pre-recorded programming will kick off on Sunday, May 16, 2021, to commemorate hae day :-).

Register yourself and all members of your household to receive your exclusive access code to participate in the 2021 US HAEA Virtual Summit Series!

https://www.haea.org/autoforms/f/147

#HAE #HAEA #2021HAEASummit #VirtualSummit #NonProfit

Thank you, US HAEA, for this wonderful invitation:

👉👉👉The US HAEA community cordially invites our HAE Canada friends to tune in to the 2021 Virtual Summit Series!

The Virtual Summit features 4 live events that take place in May, June, July, and August as well as pre-recorded videos of highly relevant HAE issues! All live events will be recorded and can be viewed along with the pre-recorded videos at your convenience.

The Virtual Summit Series offers “must see” programming that includes:
--Information regarding new HAE therapies on the horizon,
--An expert panel of HAE Physician/Scientists who will answer HAE-related questions,
--Special segments covering
-the latest information on HAE with Normal C1inhibtor,
-HAE in women, and
-Children with HAE.
--An overview of the latest patient-driven research initiatives,
--Sessions targeted especially for the youngest members of the HAE community, and
--Interactive features allowing you to post to our community board and take selfies at our selfie station!

The exclusive live and pre-recorded programming will kick off on Sunday, May 16, 2021, to commemorate hae day :-).

Register yourself and all members of your household to receive your exclusive access code to participate in the 2021 US HAEA Virtual Summit Series!

https://www.haea.org/autoforms/f/147

#HAE #HAEA #2021HAEASummit #VirtualSummit #NonProfit

HAE Canada is happy to share that Saskatchewan is the latest province to add lanadelumab (TAKHZYRO), a subcutaneous prev...
05/11/2021

HAE Canada is happy to share that Saskatchewan is the latest province to add lanadelumab (TAKHZYRO), a subcutaneous preventative HAE treatment, to their provincial drug formulary.

Please click the link below to read the Exceptional Drug Status (EDS) Benefit Criteria from the provincial government.
https://formulary.drugplan.ehealthsask.ca/Bulletins/Bulletin-0199-May-2021.pdf

This is amazing news for eligible HAE patients living in Saskatchewan. Thank you to both Takeda Canada and the Saskatchewan government for the dedication and work that went into ensuring HAE patients have the option to access this treatment.

To access this treatment, please speak to your HAE specialist or a representative from the OnePath program.

HAE Canada is happy to share that Saskatchewan is the latest province to add lanadelumab (TAKHZYRO), a subcutaneous preventative HAE treatment, to their provincial drug formulary.

Please click the link below to read the Exceptional Drug Status (EDS) Benefit Criteria from the provincial government.
https://formulary.drugplan.ehealthsask.ca/Bulletins/Bulletin-0199-May-2021.pdf

This is amazing news for eligible HAE patients living in Saskatchewan. Thank you to both Takeda Canada and the Saskatchewan government for the dedication and work that went into ensuring HAE patients have the option to access this treatment.

To access this treatment, please speak to your HAE specialist or a representative from the OnePath program.

We are over the moon that our members are telling us that they are excited about having access to HAEGARDA, a subcutaneo...
05/03/2021

We are over the moon that our members are telling us that they are excited about having access to HAEGARDA, a subcutaneous C1 esterase inhibitor (C1-INH) prophylaxis therapy for adolescent and adult HAE patients.

We want to make sure the message reaches patients everywhere, so to reiterate: YES, HAEGARDA is available to all eligible HAE patients across Canada.

Please read more details on the CSL Behring News Release:
https://www.cslbehring.ca/news/2021/haegarda-approved-all-of-cda

To access HAEGARDA, please contact your HAE specialist or ask a CSL Behring PLUS+ program representative for guidance.

If you have questions, please feel free to email [email protected].

We are over the moon that our members are telling us that they are excited about having access to HAEGARDA, a subcutaneous C1 esterase inhibitor (C1-INH) prophylaxis therapy for adolescent and adult HAE patients.

We want to make sure the message reaches patients everywhere, so to reiterate: YES, HAEGARDA is available to all eligible HAE patients across Canada.

Please read more details on the CSL Behring News Release:
https://www.cslbehring.ca/news/2021/haegarda-approved-all-of-cda

To access HAEGARDA, please contact your HAE specialist or ask a CSL Behring PLUS+ program representative for guidance.

If you have questions, please feel free to email [email protected].

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