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ANGIOEDEMA CENTERS OF REFERENCE AND EXCELLENCE (ACARE)

acare-network.com

The ACARE program is a joint initiative by GA²LEN (Global Allergy and Asthma Excellence Network) and HAEi (Hereditary Angioedema International) with the aim of developing and accrediting an interactive network of centers of reference and excellence in angioedema management.

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HEREDITARY ANGIOEDEMA ASSOCIATION (HAEA)

HAEA.org

A non-profit advocacy organization serving people with HAE and their caregivers. Through a passionate commitment to the HAE community, they offer a wide variety of services and resources that further HAE education, clinical research, community engagement, access to medications, personalized support networks, and a wide range of services to help people living with HAE lead a normal life.

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HAE INTERNATIONAL (HAEi)

HAEi.org

A global non-profit network of patient associations dedicated to improving the lives of people with HAE. They are a group of compassionate HAE patients and caregivers who make it their life’s work to raise awareness of HAE, improve time to diagnosis, and fiercely advocate for approval and reimbursement of lifesaving therapies to everyone suffering from HAE.

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HAEi LEAP

youngsters.haei.org/leap-welcome-program/

An educational program, developed by HAEi, that allows young people to learn new skills and develop as individuals and advocates.

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NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)

rarediseases.org

A comprehensive resource for people with a rare disease and their caregivers, including rare disease facts and statistics, information on living with a rare disease, mentoring organizations, improving clinical care, and community support.
NORD and the NORD logo are registered trademarks of the National Organization for Rare Disorders. NORD is a registered 501(c)(3) charity.

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The third-party resources cited above are for the reader’s information only. Pharvaris does not endorse and is not responsible for the content included in these resources.

See the HAE glossary of key terms

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Resources

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FOR PEOPLE WITH HAE AND THEIR CAREGIVERS
WHAT EVERY FAMILY NEEDS TO KNOW: THE BURDEN AND TRADE-OFFS OF LIFE WITH HAE
WHAT EVERY FAMILY NEEDS TO KNOW: THE BURDEN AND TRADE-OFFS OF LIFE WITH HAE
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Find more helpful resources, including
“The Guide to Women with HAE” at haea.org and
the downloadable HAE TrackR app at haei.org

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The third-party resource cited above is for the reader’s information only. Pharvaris does not endorse and is not responsible for the content included in this resource.

FREQUENTLY ASKED QUESTIONS (FAQs)

This information is not intended to replace a healthcare provider’s advice. Please consult your healthcare provider for medical guidance based on your individual needs.

What is HAE?

Hereditary angioedema (HAE) is a rare genetic disease that affects only about one person in 30,000 to one person in 80,000 worldwide. It causes sudden and painful swelling in the body that can last for days if left untreated. The pain and swelling can be disabling—making HAE physically and emotionally hard for people living with it. HAE is unique to each person. While one person may have many attacks in a month, another person may go months without one.

What are the symptoms of HAE?

HAE can appear in any part of the body, but is most common in the hands, feet, genitals, stomach, face, and throat. Attacks of the airway are particularly dangerous because they can cause death from being unable to breathe. HAE attacks can start in one location and spread to another. In general, you cannot predict when an attack will happen. In fact, the area, number, and severity of attacks can change over time. However, certain triggers have been found to increase the chance of an attack, such as physical injury, stress, or even excitement. Before an attack, some patients may notice early warning signs, called prodromes, such as tingling, rash, fatigue, or nausea.

Is there a cure for HAE?

While there is no cure for HAE, there are several ways to manage it, including infusions, injections, or oral medications. Management falls into two categories: one way is to prevent swelling and the other is to treat an attack when it happens. Today’s HAE management may come with trade-offs that require people to choose among options that work well, are tolerable, and/or are convenient to use.

Why is HAE so hard to diagnose?

Because HAE is so rare, healthcare providers may not have heard of it. The swelling HAE causes may be mistaken for an allergic reaction or other conditions, such as appendicitis, when involving the abdomen. This can lead to delays in getting the right diagnosis, not getting the proper treatment, and having unnecessary medical procedures.

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Burden of HAE Management

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Living with HAE

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References

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