We’ve written before about eosinophilic esophagitis or EoE, but wanted to share some information today about an important advocacy group dedicated to patients and families with EoE and other eosinophilic disorders known as APFED – the American Partnership for Eosinophilic Disorders.
How APFED Got It’s Start
APFED was started by Elizabeth Mays, a mother whose son had eosinophilic gastroenteritis, to create a place where families could “come together to share knowledge, educate themselves, arm themselves with credible information, meet and support one another, raise public awareness and generate research dollars.”
The group is an excellent resource for accurate, up-to-date information on eosinophilic disorders and related problems. Not only does APFED increase awareness and educate patients and physicians, the group also works to increase funding for research.
Annual APFED Conference for Caregivers
Every year APFED hosts parent conference. The conference is a great opportunity for children affected by eosinophilic disorders and their families to learn from experts and one another.
Over-the-years, we have filmed attendees to help increase awareness about eosinophilic disorders. Here’s a quick overview of interviews from APFED conference in 2011:
In 2012, along with APFED, we released Eosinophilic Esophagitis (EoE) patient discharge video. The video stars “Gus” the Esophagus and some doctors you may have met before.
This video provides newly diagnosed patients, their families and friends, with resource about:
- Treatment options; and
- Tips for living a happy and healthy life with Eosinophilic gastrointestinal disorders (EGID).
Blog post updated: 4.2.18