Hereditary Angioedema Archives - HAE Canada

HAEi- Bringing International to HAE

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As Canadians living with hereditary angioedema we often feel quite isolated, not only in our own communities, but internationally. As a relatively young country with a large but spread-out population, we often hear tales from across the seas of how HAE is being handled in other countries, their advanced treatments and resources.

Even more often we are tempted to peek over the fence to see what our neighbors to the South are doing about HAE, how their patient group is faring, and what new treatments are coming their way, and we hope, eventually ours.

In this longing for global connectedness, we are not alone. And so it was that in 2002, during a short meeting of HAE experts and patient representatives in Palermo (Sicily), patients and physicians recognized the need for a formal alliance that would facilitate worldwide information sharing and coordination of HAE research and other activities; and the idea for HAEi was born.

A group of HAE patient advocates took up the challenge of establishing a legally recognized international patient organization that would include a prestigious medical advisory panel and despite a series of bureaucratic obstacles, the organization was finally registered in France in November 2004.

HAE international (HAEi) is now a global organization dedicated to raising awareness of C1 inhibitor deficiencies around the world. It is a non-profit international network of national HAE patient Associations that aims to established and promote co-operation, co-ordination and information sharing between HAE Specialists and National HAE Patient Associations in order to help facilitate the availability of effective diagnosis and management of C1 inhibitor deficiencies throughout the world.

Last year, in 2012, HAEi launched a new project to try and help raise awareness and bond HAE associations internationally, by making May 16th hae day :-).

Hae day :-) is now an annual event which aims to raise awareness of Hereditary Angioedema (HAE) among the general public and medical community, with the aim of creating an environment in which there is better care, earlier and more accurate diagnosis, and knowledge that HAE patients can lead a healthy life.

A cornerstone of their 2013 hae day :-) project is the “Cover the world with smiles” campaign, which is an interactive map on which you can post your “smiles” to show solidarity and support for HAE patients worldwide.

HAE Canada is one of the many National Member Organizations of HAEi and we want to spread awareness and support HAEi and hae day :-) by encouraging everyone to add their smile to the map at www.haeday.org/smile. It is a small way in which we can build the global connection that we all want, and that HAEi is working to create

You can read more about HAEi, its creation and its mandate on their website and more about HAE Day here.

Rare Diseases Without Borders – Answering TTP (Part 2)

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Today is the 6th annual Rare Disease Day, and an opportunity for HAE Canada to put aside our cause, for just one day, and recognize that we are a part of a vast and incredible community of all rare diseases.

In celebration of this day, we have chosen to take the opportunity to spotlight another rare disease group from the Canadian rare disease community. Answering TTP is the patient group for Thrombotic Thombocytopenic Purpura, a disease that is so rare it affects only 3 in 1 million people (read more about TTP in yesterday’s article). Read More

Rare Diseases Without Borders – Answering TTP (Part 1)

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Alone we are rare, together we are strong. Tomorrow is the 6th annual Rare Disease Day! Every year on the last day in February, countries from around the world come together to raise awareness about rare diseases.

But beyond raising awareness, Rare Disease Day also marks an opportunity for people within the rare disease community to put aside our individual causes and see the rare disease community as a whole. Read More

The First Global Guideline for the Management of HAE

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On December 5th, 2012 the World Allergy Organization (WAO) HAE International Alliance published in the World Allergy Journal, the first global guideline for the management of HAE (full article here: WAO Management of Hereditary Angioedema).

At the consensus conference held in Gargnano del Garda, Italy, from September 26 to 29, 2010,  58 experienced HAE expert physicians from 17 countries and 22 representatives of the 5 pharmaceutical companies producing drugs for HAE, sat down to develop an international consesnsus on the management of HAE. (The pharmaceutical representives did not take part in any voting procedures.)

Two years later, this document is the result of that conference. Read More

Cinryze Comes to Canada

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Cinryze Comes to Canada

On January 25, 2013, HAE Canada received word from Canadian Blood Services (CBS) that, effective April 1, 2013, they will be adding a second supplier of C1 esterase inhibitor to their portfolio. Viropharma’s C1 esterase inhibitor product, Cinryze, has been given a five year contract with CBS, who will officially cover the cost and distribution of Cinryze to the Canadian market. This does not yet apply in Québec, where Héma-Québec is the official supplier of blood products.

Although there has already been a C1 esterase inhibitor treatment on the market for over two years now, the two products have different indications. An indication is the use for a product or treatment that Health Canada has approved based on safety and effect.  CSL Behring’s drug Berinert is indicated for the treatment of acute abdominal or facial attacks of moderate and severe intensity and Cinryze is indicated for routine prevention of angioedema in adults and adolescents.

With Cinryze’s entrance into the market, Canadian HAE patients will now have access to both “prophylactic” and “acute” treatment options. Having both Berinert and Cinryze in the market will hopefully provide HAE patients in Canada with the appropriate treatments to match their needs.

We thank both CSL Behring and ViroPharma for supporting hereditary angioedema treatment and research.

The future is bright for Canadian HAE patients!

 

Vancouver HAE Update: Review

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On November 15th, ten patients and family members gathered together with five BC physicians at the Steamworks Brewpub in Vancouver to discuss hereditary angioedema, ask their questions, and listen to guest speaker Dr. Amin Kanani.

For some of the patient’s it was the their first time meeting another patient and it helped everyone realize the importance of spreading awareness about HAE and signing up for membership. Read More

Presentations for Download from the 2012 Patient Summit

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Social Worker, Kristy Brosz, and HAE President, Tammy Armoogan, presenting on Psychosocial Issues.

This year HAE Canada held the first ever Canadian national summit for hereditary angioedema patients. We had several fabulous presenters from across Canada, who spoke on many interesting topics. If you didn’t get the chance to attend in person, or just want to revisit the information, we have gathered several of the speaker’s presentations here for you to download. (Note: All of the downloads will open as PDF’s if you do not currently have a program for reading PDF’s you can download one for free here.)

Please enjoy!

Click on the Orange links on the right to open each one:

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