HAE Canada members can view past recordings of our Patient Information Updates on the HAE Canada Cafe portal. Click the HAE Canada Cafe menu item to join. It’s free!
Virtual Patient Information Update & 2022 AGM
On November 5th, 2022, over 75 HAE patients and their caregivers logged in for HAE Canada’s Virtual Patient Information Update; live-streamed from Hamilton, ON. The day kicked off with staff member, Daphne Dumbrille, highlighting some of HAEC’s projects and resources, followed by Board member, Michelle Cooper (Ontario Regional Director and VP) who shared our experience at the recent HAEi Global Leadership Workshop in Frankfurt, Germany.
Next, attendees listened to two members, Jordyn and Danielle, who each shared their experiences as a patient – from diagnosis to treatments. We greatly appreciated hearing how HAE has affected their lives and how they do not allow HAE to define who they are.
Dr. Paul Keith (MD), an allergist/immunologist from Hamilton, presented on treatment options for patients in Canada while emphasizing the benefits and importance of participating in clinical trials in Canada.
Dr. Sylvain Grenier, Director of Plasma Protein Products Formulary Program at Canadian Blood Services, joined Dr. Keith to answer both pre-submitted and live questions from attendees.
Thank you to all our presenters who generously took the time out of their weekends to provide our members with current and helpful information. We greatly appreciate you all sharing your expertise with us.
After the questions were answered, we said goodbye to our presenters and Heather Dow called the 2022 Annual General Meeting to order.
We are thrilled to have our experienced Board members returning again this year:
- Jacquie Badiou Director
- Carmen Craciun Director
- Michelle Cooper Director – Ontario
- Martine Paquette Director – Quebec
- Dwayne Semple Director – Atlantic
- Kim Speiss Director – Central
- Kerstyn Lane Director – Pacific
Tina McGrath, who was on the Board since 2018, mainly in the role of Ontario Regional Director and she also dedicated countless hours to the Governance Committee, decided to step down and not renew her term. We want to send a huge thank you to Tina, for her many years contributing her valuable time expertise, to help with the success of HAE Canada. Your kindness and dedication to detail will be missed by us all. We wish you all the best in your next adventure!
Thank you, also, to Heather for providing IT / Zoom support throughout the day and for expertly charing the AGM. We appreciated having you there with us!
CORD Conference: Building Canada's SMART Rare Disease & Rare Drug System
An HAEC staff and a Board member attended (in person) the Canadian Organization for Rare Disorders (CORD)‘s spring conference in Ottawa. The goal of the conference was to bring together key stakeholders to discuss the importance of a holistic and comprehensive Rare Disease & Rare Drug System in Canada. CORD achieved their goal; it was a fantastic two days.
The jam packed agenda covered topics ranging from the importance of genetic testing & newborn screening, to why it is essential that Canada’s system must be holistic and consider patient’s full needs and not just their access to treatment. Registries, early diagnosis and creating Centres of Excellence were also top on the list of vital aspects to a successful Rare Disease & Drug System.
CORD invited a wide variety of panelists to discuss these topics, such as representatives from Health Canada, pharmaceutical companies & the Canadian Agency for Drugs and Technologies in Health (CADTH). Physicians and patients were also front and centre presenting on their experiences and knowledge of working and living with rare diseases. HAEC staff member participated on a panel titled Patient Engagement and Patient Empowerment.
CORD will soon post the recording on their website. Check back later and click the image below to watch the recording.
2021 HAE Canada AGM
Thank you to all who attended or sent in a proxy form for the 2021 Annual General Meeting. Your engagement allowed us to pass necessary motions and conduct a successful meeting.
Thank you to our outgoing Board members, Suzannah LeVatte-MacDonald (Atlantic Regional Director) and Lorraine Coumont (Pacific Regional Director). Over the years, Lorraine dedicated countless hours connecting with members in western Canada and organizing multiple Patient Updates; her commitment was invaluable. Both Lorraine and Suzannah’s contributions are appreciated and we are grateful they will continue on as Regional Director Assistants.
We are excited to announce our new Board members who will bring their own expertise to the Board. We want to extend a huge welcome to:
- Kerstyn Lane (Regional Director: Pacific)
- Martine Paquette (Regional Director: Quebec)
- Dwayne Semple (Regional Director: Atlantic)
- Kim Speiss (Regional Director: Central)
We are very happy our experienced Board members remain on the team:
- Jacquie Badiou (President)
- Michelle Cooper (VP & Regional Director: Ontario)
- Carmen Craciun (Treasurer & Secretary)
- Tina McGrath (Director at Large)
Virtual Patient Information Update
We want to extend a huge thank you to two London area physicians who spent their Saturday afternoon with us to share their expertise with our members. Dr. Samira Jeimy (MD, PHD, FRCPC, Allergy & Clinical Immunology) spoke on her top ten things she wants HAE patients to know about during pregnancy, and Dr. Harold Kim (MD, FRCPC, Allergy & Clinical Immunology) discussed information on HAE treatments and how to gain access in Ontario.
We also heard from the Ontario Regional Director, Michelle Cooper, who shared her patient journey and how she joined the HAE Team.
Jacquie Badiou (President HAEC) asked members from HAE International, namely Anthony Castaldo (President & CEO), Fiona Wardman (Treasurer & Chief Regional Patient Advocate) and Henrik Balle Boysen (Executive VP & COO) about their HAE stories and how they started with their advocacy work. Anthony also presented on Treatments on the Horizon.
Thank you to the physicians and Anthony for staying for the Q&A session when we were also joined by Dr. William Yang (MD, FRCPC, FAAAAI) and Dr. Sylvain Grenier (CD, B Pharm, PharmD, FFIP, FOPQ, Director at Canadian Blood Services). Your time and expertise was greatly appreciated.
Thanks to Heather Dow, the day ran smoothly with presentations & discussions remaining online!
Thank you to all those who were able to join us from our membership – we hope you enjoyed the afternoon as much as we did!
HAEA's 2021 Summit Series
Thank you to HAEA for inviting HAE Canada members to the 2021 Summit Series.
The Virtual Summit featured four live events that took place in May, June, July, and August and also featured pre-recorded videos of highly relevant HAE issues.
The Virtual Summit Series included:
- 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 C1 Inhibtor,
- 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!
Virtual Patient Information Update
To replace the planned in-person Patient Information Update in Manitoba, HAE Canada hosted a virtual Patient Information Update, on Saturday, May 15th, 2021. Registration was open to members across Canada.
Members joined us for an on-line Zoom meeting that focused on access to current and upcoming HAE treatments. Speakers answered pre-submitted questions after their presentation. Attendees also had the opportunity to listen to a fellow patient’s perspective on living with HAE.
INVITED SPEAKERS WERE:
- Dr. Chrystyna Kalicinsky: MD, FRCPC
- Dr. Sylvain Grenier: Director, Plasma Derived Products Formulary Program, Canadian Blood Services
- Anthony Castaldo: HAEA & HAEi, CEO & President, Regional Patient Advocate (RPA) for North America
- Kim Speiss: newly appointed Regional Director for Manitoba & Saskatchewan
- Jacquie Badiou, President, HAE Canada
- Daphne Dumbrille, COO, HAE Canada
CORD's Rare Disease Day Conference: From Draft to Action Plan
Staff and three Board members (and a few members too!) attended the Canadian Organization for Rare Disorders (CORD)’s Virtual Rare Disease Day Conference: From Draft to Action Plan. As always, CORD did a fantastic job hosting this event. Invited expert speakers, along with CORD’s President, did a wonderful job explaining the issues surrounding rare diseases in Canada and how the current situation needs to improve. Attendees were given the opportunity to participate and ask questions.
Please click the button to the right to find links to CORD’s recorded conferences and webinars.
2020 HAE Canada AGM
Thank you to all who attended or sent in a proxy form for the 2020 AGM. Your efforts allowed us to successfully conduct our meeting and we are proud to say all motions passed and we were able to welcome new members to our Board of Directors. We are also happy to report that we passed our updated bylaws. We are always grateful and appreciative of our engaged membership.
Thank you also to our outgoing Board members, Kari Feere (Atlantic Regional Director), Richard Badiou (Treasurer) and Anne Rowe (Director at Large). It was wonderful working with all of you over these past years and your contributions have been greatly appreciated. Richard spent many years as Treasurer, ensuring HAE Canada’s finances are properly kept in order in accordance to all rules and regulations. We always knew HAE Canada’s finances were in expert hands with Richard at the helm. We are grateful he will remain on our Finance Committee. Anne Rowe is also leaving our Board, however, thankfully she will remain on our Governance Committee. Anne has been with HAE Canada from the start and has spent many years ensuring we adhere to all proper governance rules, while sharing her nursing knowledge with the rest of the Board. Her years devoted to HAE Canada are truly appreciated.
We are excited to announce our new Board members who will bring enthusiasm and their own expertise to the Board. We want to extend a huge welcome to:
- Carmen Craciun (Director at Large)
- Michelle Cooper (Regional Director: Ontario)
- Suzanna LeVatte-MacDonald (Regional Director: Atlantic)
We are excited to work with our new Board members and very happy to continue working with three remaining Board members:
- Jacquie Badiou (Director at Large)
- Tina McGrath (Director at Large)
- Lorraine Coumont (Regional Director: Pacific)
Virtual Patient Information Event
On June 29th, HAE Canada hosted a members-only Virtual Patient Information Update to discuss access to current and upcoming HAE treatments in Canada. This event was a live, on-line Zoom meeting with presentations by:
Dr. Sylvain Grenier, CD, B Pharm, PharmD, FFIP, FOPQ, Director, Plasma Protein Products Formulary, Canadian Blood Services
Dr. Bruce Ritchie, MD, FRCPC, Professor, Division of Hematology, Dept. of Medicine at University of Alberta
Jacquie Badiou, President, HAE Canada
Daphne Dumbrille, COO, HAE Canada
Thank you Dr. Grenier for taking the time to present and provide our membership with details regarding access to treatment for Canadian HAE patients. Learning the complex, yet vital role that Canadian Blood Services plays in the lives of all Canadian HAE patients is helpful and important to learn. We believe you have reassured our membership that Canadian patients are safe when CBS provides treatment to HAE patients. Also, we need to thank Dr. Ritchie for once again providing our members with answers to a variety different medical questions; it is certainly beneficial to be armed with HAE knowledge.
We all greatly appreciated the time and expertise both Dr. Grenier and Dr. Ritchie provided during the Question & Answer session. We had approximately 180 people watching the webcast so your answers reached many. Thank you for that.
If you missed the Update, not to worry! Simply join the HAE Canada Cafe (click the menu item to the left) where you can view our past Information Updates.
2020 Virtual HAE Global Conference
Please check out the HAE Global Conference from the comforts of home. HAEi worked magic to have their amazing conference available virtually so everyone can benefit from the informative presentations and amazing content that the conference is well known for. Please consider taking advantage of this amazing opportunity by simply visiting the HAEi 2020 Global Conference website. You can find all the submitted poster presentations, including HAE Canada’s presentation under Topic 2: Creating a Path to Normalisation of HAE Patients’ Lives, titled “Fear of Attacks Reduces Quality of Life for Canadian HAE Patients“ on the Scientific portion of the site.
Edmonton Patient Information Update
Thank you to Dr. Bruce Ritchie who spent his Saturday morning with Edmonton-area HAE Canada members. The Update was our first Webcast and it went very smoothly, thankfully! We are all getting used to living in the virtual world and we were grateful for everyone’s patience while we learn how to adapt. All enjoyed and benefited from Dr. Ritchie’s discussion on HAE and the latest treatments available in Canada – as well as learning about treatments that will be available in the future. Dr. Ritchie answered the many questions that were submitted before and during the Webcast. Thank you to our amazing Regional Director Pacific, Lorraine Coumont, who connected with most members before the event to ensure they were aware of the event and helped them join online. Thank you also to Dr. Ritchie’s staff who invited his HAE patients to the event – we appreciated your help.
If you missed the Update, not to worry! Simply join the HAE Canada Cafe – our members-only portal where we post our past recorded Patient Info Updates (to join, simply click the menu item to the left and follow the easy steps).
CANCELLED - Winnipeg Patient Information Update
Unfortunately, due to COVID-19, we had to postpone our Winnipeg Information Update. Stay tuned for when we announce the new date.
CORD's Rare Disease Day Conference 2020
Board members and staff were lucky to participate in the Canadian Organization for Rare Disorders’ conference before COVID-19 caused all conferences to be cancelled. The conference focused on learning about Canada’s Rare Disease Strategy and the impacts the PMPRB changes will have on rare disease treatments in Canada. All participants also walked to Parliament Hill to promote CORD’s “Fight for our Lives” campaign. It was a great conference!