VOLUNTEER: HAE Canada has a number of volunteer opportunities available. If you are interested in volunteering please view a description of the opportunities and let us know what your interest is by contacting the HAE Canada office.
DONATE: HAE Canada is incorporated as a Not-For-Profit organization, but because of the expense and administrative burden associated with seeking charitable status, it has not sought to become a registered charity. HAE Canada welcomes donations to assist our education and advocacy work. To donate without receiving a tax receipt, simply contact the HAE Canada office. For those who wish to receive a charitable tax receipt, HAE Canada works with the Canadian Organization for Rare Disorders to make online donations possible. Please go to the www.raredisorders.ca website, click on DONATE and enter “HAE Canada” in the message/instructions box. The Canadian Organization for Rare Disorders will ensure that HAE Canada receives your donation.
SHARE YOUR EXPERIENCE: Hereditary angioedema patients are encouraged to share stories and photographs of their experiences with HAE. We will use your experiences to help others facing similar challenges. Every patient has a unique story of their experience with hereditary angioedema and how it has shaped their lives. If you would be willing to share your story, please write it down and send it to email@example.com. We are also looking for photographs of Canadian patients during swelling attacks.
As an example, here is an excerpt from one patient story:
From childhood I had many episodes of painful swellings in different parts of my body that could not be explained. Some of these occurrences were treated with surgeries that weren’t necessary (i.e. laparoscopy and appendectomy). In my late teens I had many hospital stays where I was given heavy pain medications for abdominal swellings. It seemed to the Doctors that I was imagining these attacks and they referred me to a psychiatrist as a way to figure out if there were actually unexplainable pains. The result was nothing wrong upstairs!
Not sure how to write up your experiences? We have created a handy tool to help you tell your story – view our Patient Story Sharing Tips.
PARTICIPATE IN RESEARCH: Participating in research is a huge way in which HAE patients can directly contribute to the knowledge and understanding of hereditary angioedema. Check back frequently to see if any new studies have been posted!
DONATE BLOOD: HAE Canada is a proud partner of the Partner For Life program with Canadian Blood Services and supporter of Héma-Québec. Because HAE treatment relies on plasma derived from donated blood, without the generous donations of thousands of people, HAE treatment would not be possible. You can make a difference by encouraging your friends and family to donate blood on behalf of HAE Canada. It’s simple!
To Donate through Canadian Blood Services:
Copy or write down HAE Canada’s Partner ID: HAEC013349
Visit the Canadian Blood Services website where you can fill out a form to Register for the Partners for Life program, inserting the HAE Canada Partner ID. So that HAE Canada can see how many people have donated blood on our behalf, please leave the box that asks “Please do not share my name and email address with the organization that I am registering on behalf of” EMPTY.
Find a Canadian Blood Services clinic near you and have your friends and family donate blood on your behalf!
To Donate through Héma-Québec:
Visit Héma-Québec’s website to find a donation site near to you and participate in their United for Life campaign.