US HAEA Patient Declaration of Rights
for HAE Treatment

HAE patients have the right to treatment that alleviates suffering and improves quality of life.

This Declaration–which is based on HAE physician treatment recommendations published in a medical journal–outlines the basic concepts of a sound approach to HAE treatment.

It can be shown to emergency room physicians, the doctor who is responsible for your day-to-day care, family members, and anyone else who plays a role in your HAE treatment.

  • icon

    Patient Declaration of Rights for HAE Treatment

    This Declaration of Rights provides patients with the fundamental treatment principles and practices established by leading HAE physician experts.

    Every HAE patient has the right to:

    • work in partnership with their HAE treating physician to establish an optimal treatment program,
    • have their preferences respected when determining an HAE management and treatment plan,
    • treatment that will control their HAE and provide the opportunity to lead a normal life,
    • access to at least 2 standard doses of an FDA-approved therapy for on-demand treatment of acute HAE attacks,
    • have all attacks, irrespective of location, considered for treatment as soon as the attack is recognized,
    • not be required to fail treatment with anabolic steroids before being prescribed an FDA-approved therapy.

US HAEA Vision Lifelong health for HAE patients

The US Hereditary Angioedema Association, Inc. (HAEA) is a non-profit patient advocacy organization founded by and staffed by HAE patients and HAE patient caregivers. The Association provides HAE patients and their families with a support network and a wide range of services including physician referrals, disease information, and individualized peer support. Our goal is to increase awareness of Hereditary Angioedema by providing patients and physicians with authoritative and readily accessible information. We are committed to advancing and conducting clinical research designed to improve the lives of HAE patients and ultimately find a cure.

More HAE related articles that might interest you

Tool Kit for hae day :-)

| Living with HAE, Take Action | No Comments
Raise awareness – use the resources in the hae day :-) tool kit hae day...

Events to Inspire for hae day :-)

| Living with HAE, Take Action | No Comments
Organize an event on hae day :-) to create awareness or fundraise hae day :-)...

Fundraising Guidelines for hae day :-)

| Living with HAE, Take Action | No Comments
Use the hae day :-) fundraiser guidelines to make your event a success    ...

Holding an hae day :-) Event

| Living with HAE, Take Action | No Comments
Organize an event on hae day :-) to create awareness or fundraise We are grateful...

 

Call us 24/7

(866) 798-5598

US HAEA Patient Advocates

We are here for you

All Patient Advocates are either patients themselves or caregivers for HAE patients.

We understand what it means to live with HAE and provide a wide range of services to HAE patients and their families.

Take Action

and make a difference

United we are strong and the more we all contribute the stronger and more powerfull we are.

Join the US HAEA Scientific Registry

 

Become a member of HAEA

 

Volunteer and make a difference

 

Become an advocate for HAE

Celebrate hae day :-)