News

CHAEN 2026 Research Fellowship

The Canadian Hereditary Angioedema Network (CHAEN) is pleased to announce that it will be offering a $50,000 annual Research Fellowship.

The objective CHAEN Research Fellowship in HAE is to:

• Increase Canadian research capacity in the area of HAE,
  
• Support the research career of promising researchers, and
  
• Produce high-quality research in the diagnosis, treatment and management of HAE

The Fellowship is for one year, non-renewable. Fellowships must commence within six (6) months of receiving the Award.

Applications must be submitted by September 30 at 11:59 pm in the applicant's time zone.

The applicant must be a postdoctoral fellow or in a research-based fellowship (Ph.D., MD or equivalent) and must currently be undertaking research training.

The award must be held at a Canadian university or research institute defined as an eligible institution by CIHR. Please note that Residents currently completing their Allergy and Clinical Immunology training are not eligible to hold this Fellowship.

Get further information and the application form.

The adjudication is being conducted by the Canadian Allergy, Asthma, and Immunology Foundation (CAAIF).

Please forward this to any interested parties.

CHAEN 2026 Chair’s Annual Report

It is my pleasure to deliver the thirteenth Chair's annual report since CHAEN was incorporated on March 25, 2013. It has continued to be an honour to serve as Chair of CHAEN and I wish to thank all the volunteers who have contributed to CHAEN over the years and who are responsible for its successes. HAEN continues to grow and now has 67 members. 

I would also like to give special thanks to our Board of Directors who have contributed their time to CHAEN to help improve the management of patients with HAE. Canada is an international leader in providing access to modern HAE treatments to patients and I am confident this is a result of the hard work all members of CHAEN have done to remain current and provide excellent care. 

I would also like to acknowledge and thank our committee volunteers and our Executive Director, Peter Waite, and his staff at the CHAEN office and welcome Kevin Beaulieu who will act as deputy ED while Peter slowly transitions out of his role at the end of 2027. 

Our Research Committee, chaired by Dr Susan Waserman, continues to be active and is committed to making progress on several fronts including: a survey of the diagnosis of hereditary angioedema with C1 inhibitor deficiency; pregnancy and HAE, a multicenter chart review; genetics of HAEn; comorbidities in HAE patients; and the impact of Covid-19 on Canadian HAE patients.  

CHAEN is pleased to announce that it offered a $50,000 annual Research Fellowship again this year. The objective CHAEN Research Fellowship in HAE is to: Increase Canadian research capacity around HAE; Support the research career of promising researchers; and produce high-quality research in the diagnosis, treatment and management of HAE.  We strongly encourage candidates to apply for this unique funding opportunity. 

Additionally, the Allergy and Clinical Immunology Fellow-in-Training three-week observer elective at the US HAEA Angioedema Center at the University of California, San Diego continues and will be offered again this year.  We encourage fellows in training to apply for this excellent learning opportunity.

CHAEN currently receives support from BioCryst, Celystra, CSL, Pendopharm and Takeda for our activities. I wish to thank the sponsors specifically. Their ongoing support of CHAEN has enabled us to carry out the work we do to achieve better care for patients with HAE. Without such support we would not be able to do the work that we continue to do. 

To remain a relevant and productive organization, CHAEN will continue to work with its members and other stakeholders including HAE Canada, AOHQ, HAE International and the sponsors among others. CHAEN continues to work closely with HAE Canada with the goal of reducing duplication of efforts. We continue to have an open dialogue that has been important to ensure both organizations are maximizing impact. CHAEN works closely with HAE Canada and AOHQ on advocacy to ensure Canadian patients have access to first line guideline recommended medications.  Dr Peter Stepaniuk has agreed to be CHAEN’s medical liaison for HAE Canada.

Guidelines continue to be key tool for practitioners and CHAEN develops and maintains HAE guidelines in accordance with the Appraisal of Guidelines for Research & Evaluation (AGREE) Instrument, which was developed to address the issue of variability in the quality of practice guidelines. I am happy to announce the current iteration of the guideline was accepted in November 2025 and in now available open access online in the Allergy Asthma and Clinical Immunology journal. This process required significant work by many, and I want to thank everyone for their contribution to this major milestone. 

Another key area of interest for CHAEN over the years has been the development of an HAE registry known as the Canadian Hereditary Angioedema Registry or CHAER. As I mentioned last year, Lumiio has continued to work closely with the CHAER Steering Committee to develop the registry. I would like to thank Lumiio for their ongoing assistance and I am pleased to say, that with multi-stakeholder engagement, we now have marked a major milestone with 5 active pilots sites added to the registry including Calgary, Hamilton, Halifax, Toronto and Vancouver. I want to thank everyone at those sites that have made this progress possible.  We next intend to rigorously engage other sites, both academic and community, moving forward. Our eventual goal will be to have all CHAEN members participating, and all their patients enrolled. 

CHAER was awarded two successive grants from the Canada Drug Agency to support rare disease registry projects. I note that the first grant of $192,000.00 and the second grant for $299,625.00 was for specific project work and not for ongoing support of registries. It was very competitive, and I want to thank everyone who came together to make this possible. I want to thank Biocryst, CSL, and Takeda specifically for their ongoing registry support as without it, it would be extremely difficult to have built and sustain the registry. 

• CHAEN has been busy over the past year providing a number of webinars for members. These include: 
• HAE update from the Budapest HAE Scientific Meeting; October 9, 2025; Amin Kanani 
• The Advancing Front of HAE Treatment; November 20, 2025; Paul Keith, Marc Riedl, Stephen Betschel; sponsored by CSL 
• Navigating the Transition from FIRAZYR to Generic Icatibant; November 26, 2025; Roxanna Ching, Margaret Gunarsons and Ahmed El-Zoeiby of Takeda and Stephen Beschel; sponsored by Takeda 
• Shared-decision making in the treatment of HAE; January 28, 2026; Dawn Goodyear, Stephen Betschel; sponsored by Takeda 
• Learnings and Insights from the HAE Global Forum in Berlin; two parts on February 1 and 11, 2026; Amin Kanani, Harold Kim, Susan Waserman and Stephen Betschel; sponsored by Takeda 

CHAEN was excited to launch its new organization page on LinkedIn at linkedin.com/company/CHAEN/. Please check it out, follow us, and share with your networks! This is an important tool to increase awareness of HAE. 

CHAEN continues to articulate to various regulatory and government bodies the importance of access to appropriate treatments for HAE. 

In September 2025 we provided feedback on the CDA’s Draft Recommendation for Andembry (garadacimab). 

In November 2025 we signed a joint letter with HAE Canada to Provincial and Territorial Ministers of Health re Access to Icatibant for Hereditary Angioedema Patients with Normal C1 Inhibitor (HAE-nC1INH). 

In May 2026 we submitted to the CDA Reimbursement Review of donidalorsen (Dawnzera). 

Also, this month we submitted a joint letter with HAE Canada to the pan Canadian Pharmaceutical Alliance (pCPA) regarding the Targeted Negotiation Process (TNP) currently underway for andembry (Garadacimab). 

Last, but not least, I am delighted to see CHAEN’s first national symposium come to fruition this year. This has allowed for our membership the opportunity to meet in person facilitating community building by exchanging ideas and networking through an outstanding educational program. I want to thank our sponsors who stepped up on short notice to make this happen:   BioCryst, Celystra, CSL, Pendopharm and Takeda. 

Despite all the hard work by CHAEN’s volunteers, we still need more members to step forward to help with the initiatives outlined above. Now that we have so many members, I hope that will be possible. I appreciate all of us are busy with many obligations, however I do ask that if anyone has time to commit to CHAEN by serving on any one of its committees please let me or the CHAEN office know. Your participation would be most enthusiastically welcomed. The success of the organization depends heavily on the support of its volunteers. 

It has been my honour to serve as Chair of CHAEN, and I look forward to serving its members as we move into our next exciting year. 

Respectfully submitted, 

Stephen Betschel

Chair

CHAEN 2025 Research Fellowship

The Canadian Hereditary Angioedema Network (CHAEN) is pleased to announce that it will be offering a $50,000 annual Research Fellowship.

The objective CHAEN Research Fellowship in HAE is to:

• Increase Canadian research capacity in the area of HAE,
  
• Support the research career of promising researchers, and
  
• Produce high-quality research in the diagnosis, treatment and management of HAE

The Fellowship is for one year, non-renewable. Fellowships must commence within six (6) months of receiving the Award.

Applications must be submitted by October 9, 2024, at 11:59 pm in the time zone of the applicant.

The applicant must be a postdoctoral fellow or in a research-based fellowship (Ph.D., MD or equivalent) and must currently be undertaking research training.

The award must be held at a Canadian university or research institute defined as an eligible institution by CIHR. Please note that Residents currently completing their Allergy and Clinical Immunology training are not eligible to hold this Fellowship.

Get further information and the application form.

The adjudication is being conducted by the Canadian Allergy, Asthma, and Immunology Foundation (CAAIF).

Please forward this to any interested parties.

CHAEN 2025 Chair’s Annual Report

It is my pleasure to deliver the twelfth Chair's annual report since CHAEN was incorporated on March 25, 2013. It has continued to be an honour to serve as Chair of CHAEN and I wish to thank all the volunteers who have contributed to CHAEN over the years and are responsible for its successes. I would also like to give special thanks to our Board of Directors who have contributed their time to CHAEN to help improve the care of patients with HAE. Canada leads the world in providing access to modern HAE treatments to patients and I am confident this is a result of the hard work all members of CHAEN have done to remain current and provide excellent care. I would also like to acknowledge and thank our committee volunteers and our Executive Director, Peter Waite, and his staff at the CHAEN office. CHAEN continues to grow and now has 64 members. 

Our Research Committee, chaired by Dr Susan Waserman, continues to be active and is committed to making progress on several fronts including: a survey of the diagnosis of hereditary angioedema with C1 inhibitor deficiency; pregnancy and HAE, a multicenter chart review; genetics of HAEn; comorbidities in HAE patients; and the impact of Covid-19 on Canadian HAE patients.  Some of these results were presented at the AAAAI in San Diego in March 2025 and the CSACI meeting in Banff, 20024. 

Understanding the importance of early career development and the need for committed research in HAE, CHAEN has established a fellowship award in the amount of $50,000.  Nominees were independently adjudicated with the assistance of the Canadian Allergy, Asthma, and Immunology Foundation and in 2023 the Fellowship was awarded to Dr Natasha Correa.  Dr Correa is finalizing the results of a physician survey that has both a quantitative and qualitative component. I understand that many members have taken part in this important project, and I thank you.  Interim results have been presented at the CSACI and more recently at the Angioedema Workshop in Budapest May 2025. 

CHAEN is pleased to announce that it offered a $50,000 annual Research Fellowship again this year. The objective CHAEN Research Fellowship in HAE is to: Increase Canadian research capacity around HAE; Support the research career of promising researchers; and produce high-quality research in the diagnosis, treatment and management of HAE 

Additionally, the Allergy and Clinical Immunology Fellow-in-Training three-week observer elective at the US HAEA Angioedema Center at the University of California, San Diego was restarted last year. Dr. Natasha Correa completed this in February 2025. This elective will be offered again this year. 

CHAEN currently receives support from BioCryst, CSL Behring and Takeda for our activities. I wish to thank the sponsors specifically. Their ongoing support of CHAEN has enabled us to carry out the work we do to achieve better care for patients with HAE. Without such support we would not be able to do the work that we continue to do. 

To remain a relevant and productive organization, CHAEN will continue to work with its members and other stakeholders including HAE Canada, AOHQ, HAE International and the sponsors among others. CHAEN continues to work closely with HAE Canada with the goal of reducing duplication of efforts. We continue to have an open dialogue that has been important to ensure both organizations are maximizing impact. CHAEN continues to work closely with HAE Canada and AOHQ on advocacy to ensure Canadian patients have access to first line guideline recommended medications. 

Guidelines continue to be key tool for practitioners and CHAEN develops and maintains HAE guidelines in accordance with the Appraisal of Guidelines for Research & Evaluation (AGREE) Instrument, which was developed to address the issue of variability in the quality of practice guidelines. The largest number of CHAEN members and international HAE experts ever gathered to develop a guideline met in Toronto on September 20-22.  The manuscript is nearly completed for submission, and we look forward to its anticipated publication within the next few months. 

One key area of interest for CHAEN over the years has been the development of an HAE registry known as Canadian Hereditary Angioedema Registry or CHAER. As I mentioned last year, Lumiio has been selected as the vendor to work closely with the CHAER Steering Committee to develop the registry. I would like to thank Lumiio for their ongoing assistance and I am pleased to say, that with multi-stakeholder engagement, we now have completed the foundation of the registry.  We have started to enrol patients at the Vancouver site under Dr Amin Kanani’s leadership and others will follow shortly including Calgary, Toronto, Hamilton, Montreal and Halifax. Once these sites are active, we intend to rigorously engage other sites both academic and community moving forward. Our eventual goal will be to have all CHAEN members participating, and all their patients enrolled. 

CHAER was awarded one of the inaugural grants from the Canada Drug Agency to support rare disease registry projects. I note that this $192,000 grant is for specific project work and not for ongoing support of registries. It was very competitive, and I want to thank everyone who came together to make this possible. 

Despite all the hard work by CHAEN’s volunteers, we still need more members to step forward to help with the initiatives outlined above. Now that we have so many members, I hope that will be possible. I appreciate all of us are busy with many obligations, however I do ask that if anyone has time to commit to CHAEN by serving on any one of its committees please let me or the CHAEN office know. Your participation would be most enthusiastically welcomed. The success of the organization depends heavily on the support of its volunteers.

It has been my honour to serve as Chair of CHAEN, and I look forward to serving its members as we move into our next exciting year.

Respectfully submitted,

Stephen Betschel

Chair

CHAEN 2024 Chair’s Annual Report

It is my pleasure to deliver the eleventh Chair's annual report since CHAEN was incorporated on March 25, 2013. It has been an honour to serve as Chair of CHAEN and I wish to thank all the volunteers who have contributed to CHAEN over the years and are responsible for its successes. I would also like to give special thanks to our Board of Directors who have contributed their time to CHAEN to help improve the care of patients with HAE. Canada leads the world in providing access to modern HAE treatments to patients and I am confident this is a result of the hard work all members of CHAEN have done to remain current and provide excellent care. I would also like to acknowledge and thank our committee volunteers and our Executive Director, Peter Waite, and his staff at the CHAEN office. CHAEN continues to grow and now has 64 members.

Our Research Committee, chaired by Dr Susan Waserman, continues to be active and is committed to making progress on several fronts including: a survey of the diagnosis of hereditary angioedema with C1 inhibitor deficiency; pregnancy and HAE, a multicenter chart review; genetics of HAEn; comorbidities in HAE patients; and the impact of Covid-19 on Canadian HAE patients.

Understanding the importance of early career development and the need for committed research in HAE, CHAEN has established a fellowship award in the amount of $50,000.  Nominees were independently adjudicated with the assistance of the Canadian Allergy, Asthma, and Immunology Foundation and in 2023 the Fellowship was awarded to Dr Natasha Correa.  Dr Correa is finalizing the results of a physician survey that has both a quantitative and qualitative component. I understand that many members have and are taking part in this important project, and I thank you.

Additionally, the Allergy and Clinical Immunology Fellow-in-Training three-week observer elective at the US HAEA Angioedema Center at the University of California, San Diego was restarted last year. Dr. Arun Dhir completed it in 2023 and Dr Natasha Correa was also accepted but has deferred due to maternity leave. The elective will be offered again this year.

CHAEN currently receives support from BioCryst, CSL Behring and Takeda for our activities. I wish to thank the sponsors specifically. Their ongoing support of CHAEN has enabled us to carry out the work we do to achieve better care for patients with HAE. Without such support we would not be able to do the work that we continue to do.

To remain a relevant and productive organization, CHAEN will continue to work with its members and other stakeholders including HAE Canada, AOHQ, HAE International and the sponsors among others. CHAEN continues to work closely with HAE Canada with the goal of reducing duplication of efforts and maximizing impact. We continue to have an open dialogue that has been important to ensure both organizations are maximizing impact. CHAEN continues to work closely with HAE Canada and AOHQ in several advocacy roles to ensure Canadian patients have access to first line guideline recommended medications.

Guidelines continue to be key tool for practitioners and CHAEN develops and maintains HAE guidelines in accordance with the Appraisal of Guidelines for Research & Evaluation (AGREE) Instrument, which was developed to address the issue of variability in the quality of practice guidelines. CHAEN convened Guideline development meetings in 2013 and 2018 leading to the publishing of Guidelines in 2014 and 2019. The meeting authors include a wide array of leading HAE experts from around the world and across Canada. The next Guideline Development meeting is planned for September 20-22, 2024, in Toronto. This will be an in person meeting to ensure open rigorous dialogue and build a sense of community for CHAEN members. All CHAEN members have been sent a registration form and COI declaration and I urge everyone to complete and return them to the CHAEN office by June 30.

One key area of interest for CHAEN over the years has been the development of an HAE registry. As I mentioned last year, Lumiio has been selected as the vendor to work closely with the Canadian Hereditary Angioedema Registry Steering Committee to develop the registry. I would like to thank Lumiio for their ongoing assistance and I am pleased to say, that with multi-stakeholder engagement, we now have completed the foundation of the registry and REB applications have been submitted, or are in the process of being submitted, at 6 key pilot sites in Vancouver, Calgary, Toronto, Hamilton, Montreal and Halifax.

This required a significant amount of work by the Registry Steering Committee which I have had the privilege to chair. Members include, Dawn Goodyear as Vice Chair, Hugo Chapdelaine, Amin Kanani, Paul Keith, Gina Lacuesta and Susan Waserman. Once these sites are active, we intend to rigorously engage other sites both academic and community moving forward. Our eventual goal will be to have all CHAEN members participating, and all of their patients enrolled. We continue to collaborate with other organizations internationally who are developing their own registries such as ACARE and the Italian HAE physician organization. Such collaboration is important to ensure data alignment and harmonization as much as possible.

You will have noticed in recent CHAEN communications that we have rebranded with a new logo that more accurately reflects the French translation of the acronym HAE. We are also excited to be shortly launching a redesigned website at a new URL at chaen-rcaoh.ca.

The public side of this website is available now, and the members only login will be launched shortly and the French side will follow.

Despite all the hard work by CHAEN’s volunteers, we still need more members to step forward to help with the initiatives outlined above. Now that we have so many members, I hope that will be possible. I appreciate all of us are busy with many obligations, however I do ask that if anyone has time to commit to CHAEN by serving on any one of its committees please let me or the CHAEN office know. Your participation would be most enthusiastically welcomed. The success of the organization depends heavily on the support of its volunteers.

It has been my honour to serve as Chair of CHAEN, and I look forward to serving its members as we move into our next exciting year.

Respectfully submitted,

Stephen Betschel
Chair