US HAEA Patient Advocates

 Meet your Patient Advocates !

We are either HAE patients ourselves or caregivers for HAE patients. We understand what it means to live with HAE.

HAEA Patient Advocates provide assistance that includes physician referrals, peer-to-peer support, guidance on access and reimbursement for your HAE medicines, and  more.

We provide a wide range of personalized services for HAE patients and their families – we are here for you!


Patients with the slightest hint of throat swelling should seek immediate medical attention (call 911) to ensure that their airway is not compromised.


Lois Perry, Assistant Vice President of Patient Advocacy

Covers: Alaska, all US Territories (Am. Samoa, Fed. States of Micronesia, Guam, Marshall Islands, Mariana Islands, Midway Islands, Palau, Virgin Islands), California,Colorado, Hawaii, Iowa, Maine, Missouri, Mississippi, Montana, Oregon, South Dakota, Utah, Virginia, West Virginia, Vermont, Washington DC

Contact Lois here

(559) 259-0572


Jenny Barnes, Senior Patient Advocate

Covers: Alabama, Arkansas, Georgia, Illinois, Louisiana, Michigan, Minnesota, North Carolina, Oklahoma, South Carolina

Contact Jenny here

(252) 585-0763


John Williamson, Senior Patient Advocate

Covers: Region 3: Arizona, Idaho, North Dakota, Nevada, Pennsylvania, Texas, Wyoming
Plus: Clinical Trials Referrals

Contact John here

(972) 984-0621


Sally Urbaniak, Senior Patient Advocate

Covers: Connecticut, Delaware, Florida, Kentucky, Massachusetts, New Hampshire, New York, Rhode Island

Contact Sally here

(904) 826-6700


Sherry Swanson, Patient Advocate

Covers: Indiana, Kansas, Maryland, Nebraska, New Jersey, New Mexico, Ohio, Tennessee, Washington, Wisconsin

Contact Sherry here

(815) 274-4206


Michelle Cuevas, Patient Advocate - se habla español

Covers Puerto Rico

(787) 366-6696

Jump to our sections with comprehensive content and learn more


What is HAE

Get to know the disease: symptoms, diagnose, treatments and more

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For healthcare providers. Knowledge, CME-programs and more

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Living with HAE

Care takers and givers: HAE will affect your life - But you can still be in control.

Take me there >


Our area with a lot of usefull information

Take me there >

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