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HAE Canada Member Status Update and Questionnaire

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HAE Canada continually strives to learn about the issues and challenges HAE sufferers face, so that we can best determine how best to assist those living wth this ultra-rare disorder. To achieve this, it is important for us to keep your records updated with regards to your contact information and some general questions pertaining to you and your family living with HAE. An HAE Canada volunteer will be contacting you over the next month or so to update the valuable information required, so we may better serve our memberships’ needs. Updated information is crucial for us when lobbying for and moving forward with: Government, to secure the availability of the most current and effective treatments in Canada; education of hospital ER Departments; general awareness in reaching out to those HAE patients not yet diagnosed; etc.. Please note the information updated in this call remains confidential and the data collected will be kept completely confidential/anonymous, for HAE Canada’s use only. We would like to thank you in advance for your cooperation with assistance in updating our files, so we may better serve your needs as HAE Canada members.

Your HAE Canada Team

Announcement From HAE Canada

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“Having commenced my studies to complete my Master’s degree this year, and taken careful stock of my time commitments, I have decided to focus fully on my MBA studies. As a result I will not be continuing to work for HAE Canada after the end of my agreement on September 1, 2016. Thank you very much for the opportunity to learn about the rare disorder community.

I take pride in having contributed to your efforts to support those living with the disease.”

Many thanks,

John Sloat

Upcoming HAEC events

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To All HAE Canada members

Below is an invitation to the HAE Canada Annual General Meeting (AGM) from 4pm to 5pm (AT) on Saturday November 12, 2016 at the Courtyard Marriott Hotel, 5120 Salter Street, Halifax, NS

Attending for weekend:      Mr Anthony J Castaldo, President HAEi and US HAEA
                                                Mr Gordon Lee. Legal Advisor for HAEC (tentative)

For further information please call 613-761-8008.

Anne Rowe
Vice President
Chair of Governance Committee
oct-212016noticeofhaecanadaagm

Upcoming HAEC events

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Hello!

We hope you all had a great summer!

HAEC will be holding several events in the upcoming months. Check your e-mails we should be sending you more information soon.

Save the date!

Oct 13, 2016
Winnipeg, Manitoba

Spring 2017
Surrey, BC

Announcement from HAE Canada

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Dear HAE Canada members, sponsors, and stakeholders,

The HAE Canada Board of Directors would like to advise that Tim Howe has decided to step down from his position as the Executive Director of HAE Canada. Over the past two years, Tim has demonstrated tremendous dedication and efforts to the Organization and its members in accomplishing key projects and objectives aimed at improving the lives of all those affected by HAE. We are sad to see Tim leave, but wish him the very best in his future endeavors.

Please note that John Sloat remains as the Project Coordinator, and can assist with any inquiries. The HAE Canada team will be examining its needs and options for additional support over the coming months and looks forward to continued growth and success.

Sincerely,

The HAE Canada Team

HAE Radio: Episode #2 – What is HAE to you?

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HAE Canada is pleased to announce that the second full length episode of HAE radio is available for everyone to listen to!

In this episode we speak with some of our members about their relationship with HAE and how it affects their lives. We also hear from Dr. Gina Lacuesta, an HAE specialist from Halifax, she talks about HAE from a medical stand point as well as outlining the many treatment options available in Canada.

HAE Radio is an initiative that we hope will help shed light on HAE in Canada. The program will explore different topics by interviewing experts, patients and caregivers.

If you have any topics that you would like us to cover please email us at HAERadio@haecanada.org

Thanks for your support!