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