HAEA.org wins the 2009 AAAAI Distinguished Layperson Award
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2009 AAAAI Distinguished Layperson Award
"In
recognition of educating the public and scientific community toward a greater
understanding of hereditary angioedema and the development of therapies to
treat this disease."
The
Hereditary Angioedema Association (HAEA) represents a new breed of rare disease
patient organizations that have been enabled by Internet's uncanny capacity for
creating communications channels that result in online communities. What
started out in 1999 as a technologically savvy patient's personal Internet page
that chronicled a family's struggle to cope with hereditary angioedema (HAE)
soon grew into a group that shared their HAE-related experiences through a
Yahoo! e-mail service. The increasing sophistication of Internet search engines
enabled more patients to find the fledgling HAE e-mail group, and the members
banded together to form the HAEA. Today, the HAEA reaches over 6,500 patients,
and has identified over 1,200 physicians that treat HAE patients.
Indeed,
these are exciting times for HAE patients who finally have access to an FDA
approved non-steroidal therapy for preventing attacks, and face good prospects
for having one or more new HAE therapies available in the very near future. As
one might expect from a "digital age" organization that was conceived
in cyberspace, the HAEA's web page (www.haea.org) serves as the principal focal point for
information dissemination and interaction among our patient community. Going
forward, we look to accelerate our growth and work with physician groups to
craft a uniquely American treatment approach that enables patients to choose a
therapeutic approach that best meets their needs. We will also continue to
provide a range of patient services and work with all stakeholders to
positively affect the quality of life for all of those afflicted by this
debilitating disease.
http://www.aaaai.org/members/grants_awards/aaaaihonoraryawards/recipients.stm
