Hereditary angioedema may be a rare disease that qualifies for “orphan” drug status, but we are far from alone.
There are HAE organizations and treatment facilities all over the world ready to provide support for their communities and anyone with HAE who wants to connect across the continents.
In fact, the Hereditary Angioedema International association has 49 member countries with 1,553 members.
So how do the HAE associations differ? Check out some of these different websites!
- HAEi bills itself as the International Patient Organization for C1-Inhibitor Deficiencies.
- HAE Australasia serves people with hereditary angioedema in Australia and New Zealand, focusing on hope, advocacy and education.
- HAE Canada is a patient group that was formed in 2010 to work with physicians, nurses and other health care professionals to create a better life for those patients living with HAE and other related angioedema in Canada.
One of the neat programs HAE Canada has is HAE Radio, a podcast that explores the realities of life with HAE in Canada.
Check out their FAQs, for a slightly different look at HAE.
