HEREDITARY ANGIOEDEMA ASSOCIATION (HAEA)
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.
HAE INTERNATIONAL (HAEi)
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.
ANGIOEDEMA CENTERS OF REFERENCE AND EXCELLENCE (ACARE)
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.
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.
HAE GLOSSARY
There are many words or phrases that come with an HAE diagnosis. This glossary can help you learn some key terms to help you better understand HAE and its treatment.
Abdominal attack
An HAE attack that causes swelling in the intestines and can cause stomach pain, nausea, vomiting, and/or diarrhea.
Allergist
A doctor that diagnoses, treats, and manages allergy-related conditions.
Bradykinin
A protein found in the blood. If there is too much bradykinin in a person’s blood, it may result in the swelling experienced during an HAE attack.
C1 esterase inhibitor
A protein that normally helps regulate swelling in the body. The genes that contribute to HAE often disregulate this protein. If there isn’t enough working C1 inhibitor, the body cannot regulate inflammation, and people may be at risk of an HAE attack.
Edema
Swelling caused by too much fluid trapped in the body’s tissues.
Hematologist
Specialized doctors who research, diagnose, treat, and help prevent blood-related conditions. They may be trained to help people with HAE.
Hereditary
Capable of being genetically inherited or passed down from parent to child.
Immunologist
Specialized doctors who study, analyze and/or treat conditions that involve the immune system. Along with a hematologist, they may be trained to help people with HAE.
Laryngeal edema attack
This type of HAE attack happens when airways in your throat swell up (specifically in the larynx). This type of attack can be life threatening if not treated as soon as possible.
On-demand treatment
An on-demand treatment that’s given when an HAE attack begins. On-demand treatment is most effective when given early. Everyone with HAE should have enough on-demand treatment for at least two attacks at all times.
Prophylactic treatment
These types of treatment help prevent HAE attacks.
Subcutaneous attacks
A type of HAE attack that affects the skin, typically on the hands, feet, face, or genitals.
Triggers
Something that sets off an HAE attack. Some common triggers are stress, excitement, infections, trauma, a medical procedure, hormone changes, and certain drugs. HAE attacks can also happen without any known triggers.
Warning signs
Before an attack begins, some people with HAE experience warning signs, such as mood changes, anxiety, fatigue, nausea, a rash, or a tingling feeling.
Not a person with HAE.
Not a person with HAE.
Subscribe to learn more about deflating HAE
Learn more about the trade-offs people with HAE may have to make. Sign up for periodic updates.
References
Abdulkarim A, et al. Hereditary angioedema. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023. https://www.ncbi.nlm.nih.gov/books/NBK482266/ • Allergy & Immunology Medical Center. Glossary of Allergy Terms. https://www.aimedcenter.com/patient-information/patient-education/glossary-of-terms/. Accessed January 19, 2024. • Angioedema Centers of Reference and Excellence. Who we are. https://acare-network.com. Accessed January 16, 2024. • Anderson J, et al. Allergy Asthma Clin Immunol. 2021;17(1):60. • Aygören-Pürsün E, et al. Allergy. 2013;68(8):1034-1039. • Aygören-Pürsün E, et al. Orphanet J Rare Dis. 2014;9(99):1-9. • Azmy V, et al. Allergy Asthma Proc. 2020;41(Suppl 1):S18-S21. • Banerjee A, et al. Cureus. 2023;15(7):e42088. • Bernstein JA, et al. Int J Emerg Med. 2017;10(1):15. • Betschel SD, et al. J Allergy Clin Immunol Pract. 2023;11(8):2315-2325. • Bork K, et al. Allergy Asthma Clin Immunol. 2021;17(1):40. • Busse PJ, et al. J Allergy Clin Immunol Pract. 2021;9(1):132-150.e3. • Chong-Neto HJ. World Allergy Organ J. 2023;16(3):100758. • Christiansen SC, et al. Ann Allergy Asthma Immunol. 2023;131(6):766-774.e8. • Covella B, et al. Future Pharmacology. 2024;4(1):41-53. • Everyday Health. Speaking hereditary angioedema (HAE): a glossary of terms used to describe symptoms, tests, treatments, and more. https://www.everydayhealth.com/hereditary-angioedema/glossary-of-terms-used-to-describe-symptoms-tests-treatments-and-more/. Accessed January 16, 2024. • Farkas H, et al. Clin Transl Allergy. 2021;11(4):e12035. • Food and Drug Administration. The voice of the patient - hereditary angioedema. Published May 2018. https://www.fda.gov/files/about%20fda/published/The-Voice-of-the-Patient---Hereditary-Angioedema.pdf. Accessed February 14, 2024. • Fouche AS, et al. Ann Allergy Asthma Immunol. 2014;112(4):371-375. • Geba D, et al. J Drug Assess. 2021;10(1):51-56. • Gülbahar O. Balkan Med J. 2021;38(2):73-81. • Hereditary Angioedema International. About HAEi. https://haei.org/about-haei/. Accessed January 16, 2024. • Hereditary Angioedema Canada. Learning to live with hereditary angioedema. https://haecanada.org/wp-content/uploads/sites/64/2020/10/HAE-Canada-patient-booklet-Updated-2020-v2.pdf. Accessed January 17, 2024. • Hereditary Angioedema International. Frequently asked questions. https://haei.org/hae/faq/. Accessed January 16, 2024. • Healthline. What is a hematologist? https://www.healthline.com/health/what-is-a-hematologist. Accessed January 17, 2024. • Lo SH, et al. Pharmacoecon Open. 2022;6(2):231-239. • Longhurst HJ, et al. Br J Hosp Med (Lond). 2019;80(7):391-398. • Lumry WR, et al. Allergy Asthma Proc. 2020;41(Suppl 1):S08-S13. • Manning ME. Allergy Asthma Proc. 2020;41(Suppl 1):S22-S25. • Maurer M, et al. Allergy. 2022;77(7):1961-1990. • Mayo Clinic. Berotralstat (oral route). https://www.mayoclinic.org/drugs-supplements/berotralstat-oral-route/side-effects/drg-20506380?p=1. Accessed January 17, 2024. • Mayo Clinic. Hives and angioedema. https://www.mayoclinic.org/diseases-conditions/hives-and-angioedema/symptoms-causes/syc-20354908. Accessed January 17, 2024. • National Organization for Rare Disorders. Hereditary angioedema. https://rarediseases.org/rare-diseases/hereditary-angioedema/. Accessed January 3, 2024. • Purdue University. College of Science. Career development. https://www.purdue.edu/science/careers/what_can_i_do_with_a_major/Career%20Pages/immunologist.html#:~:text=Immunologists%20are%20research%20scientist. Accessed January 17, 2024. • Radojicic C, et al. Allergy Asthma Proc. 2021;42(3):S4-S10. • Riedl MA, et al. Ann Allergy Asthma Immunol. 2017;119(1):59-64. • Riedl MA, et al. Allergy. 2020;75(11):2879-2887. • Riedl MA, et al. Allergy Asthma Proc. 2021;42(3):S17-S25. • Santos GM, et al. Cureus. 2023;15(10):e47644. • Savarese L, et al. Allergy Asthma Proc. 2021;42(1):e1-e7. • Soteres DF, et al. Clin Case Rep. 2021;9(11):e05086. • US Hereditary Angioedema Association. https://www.haea.org/. Accessed January 16, 2024. • US Hereditary Angioedema Association. Conquering hereditary angioedema together. https://www.haea.org/. Accessed January 16, 2024. • US Hereditary Angioedema Association. About hereditary angioedema. https://www.haea.org/pages/p/what_is_hae#:~:text=Symptoms%3A%20HAE%20Attacks,those%20in%20the%20same%20family.%204. Accessed January 16, 2024. • US Hereditary Angioedema Association. Treatments. https://www.haea.org/pages/p/treatments. Accessed January 17, 2024. • Wedner HJ, et al. J Allergy Clin Immunol Pract. 2021;9(6):2305-2314.e4. • Zacek L. Nursing. 2022;52(12):44-50. • Zanichelli A, et al. Ann Allergy Asthma Immunol. 2016;117(4):394-398. • Zuraw BL. World Allergy Organ J. 2010;3(9 Suppl):S25-8.