…our core principles remain the same – caring, compassion and kindness”
The US Hereditary Angioedema Association (US HAEA) represents a new breed of rare disease patient organization. In 1999, one patient’s personal Internet page that chronicled a family’s struggle to cope with HAE quickly grew into a patient group that shared their HAE-related experiences through a Yahoo email service. The increasing sophistication of Internet search engines enabled more patients to find the HAE email group, and the members banded together to form the US HAEA.
A Patient Services team was formed. This group of volunteers began responding to patient requests for help and answered the call to action to solve HAE problems. Seven Patient Services staff (Representatives) now serve HAE patients full-time.
The US HAEA’s growth since its inception has been exponential, but our core principles remain the same – caring, compassion and kindness. As we look ahead to the future, the US HAEA is proud to be known as a patient services and research organization.
New educational initiatives, a re-designed web site and a social networking site (Facebook) are just some of the ways we keep up with the changing landscape of HAE.
From patients meeting by chance online to a family of more than 6500, the US HAEA has been there for you through the last decade and will continue to be there for you for many decades to come.