For you and people with HAE
ANGIOEDEMA CENTERS OF REFERENCE AND EXCELLENCE (ACARE)
The ACARE program is a joint initiative by GA²LEN (Global Allergy and Asthma European 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.32
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.33
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.34
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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.35
Allergist
A doctor that diagnoses, treats, and manages allergy-related conditions.36
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.6,31,35
C1 esterase inhibitor
This is an enzyme in the fluid component of blood that controls a protein called C1.35
Edema
Swelling caused by too much fluid trapped in the body’s tissues.35
Hematologist
Specialized doctors who research, diagnose, treat, and help prevent blood-related conditions. They may be trained to help people with HAE.35,37
Hereditary
Capable of being genetically transmitted or passed down from parent to child.35
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.35,38
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.35
On-demand treatment
An on-demand treatment that’s given when an HAE attack begins. On-demand treatment is most effective when administered early. Everyone with HAE should have access to on-demand treatment for at least two attacks at all times.6,28
Prophylactic treatment
This type of treatment helps prevent HAE attacks.35
Subcutaneous attacks
A type of HAE attack that affects the skin, typically on the hands, feet, face, or genitals.35
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.6,17,35
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.35
Not a person with HAE.
Not a person with HAE.
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References
1. Lumry WR, et al. Allergy Asthma Proc. 2020;41(Suppl 1):S08-S13. 2. Betschel SD, et al. J Allergy Clin Immunol Pract. 2023;11(8):2315-2325. 3. Radojicic C, et al. Allergy Asthma Proc. 2021;42(3):S4-S10. 4. Aygören-Pürsün E, et al. Orphanet J Rare Dis. 2014;9(99):1-9. 5. Savarese L, et al. Allergy Asthma Proc. 2021;42(1):e1-e7. 6. Maurer M, et al. Allergy. 2022;77(7):1961-1990. 7. National Organization for Rare Disorders. Hereditary angioedema. https://rarediseases.org/rare-diseases/hereditary-angioedema/. Accessed January 3, 2024. 8. Santos GM, et al. Cureus. 2023;15(10):e47644. 9. Christiansen SC, et al. Ann Allergy Asthma Immunol. 2023;131(6):766-774.e8. 10. 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. 11. Longhurst HJ, et al. Br J Hosp Med (Lond). 2019;80(7):391-398. 12. Gülbahar O. Balkan Med J. 2021;38(2):73-81. 13. Bork K, et al. Allergy Asthma Clin Immunol. 2021;17(1):40. 14. Manning ME. Allergy Asthma Proc. 2020;41(Suppl 1):S22-S25. 15. Farkas H, et al. Clin Transl Allergy. 2021;11(4):e12035. 16. Zuraw BL. World Allergy Organ J. 2010;3(9 Suppl):S25-S28. 17. Aygören-Pürsün E, et al. Allergy. 2013;68(8):1034-1039. 18. Fouche AS, et al. Ann Allergy Asthma Immunol. 2014;112(4):371-375. 19. Lo SH, et al. Pharmacoecon Open. 2022;6(2):231-239. 20. Anderson J, et al. Allergy Asthma Clin Immunol. 2021;17(1):60. 21. Chong-Neto HJ. World Allergy Organ J. 2023;16(3):100758. 22. Riedl MA, et al. Allergy Asthma Proc. 2021;42(3):S17-S25. 23. Soteres DF, et al. Clin Case Rep. 2021;9(11):e05086. 24. Riedl MA, et al. Ann Allergy Asthma Immunol. 2017;119(1):59-64. 25. Covella B, et al. Future Pharmacology. 2024;4(1):41-53. 26. Wedner HJ, et al. J Allergy Clin Immunol Pract. 2021;9(6):2305-2314.e4. 27. Riedl MA, et al. Allergy. 2020;75(11):2879-2887. 28. Busse PJ, et al. J Allergy Clin Immunol Pract. 2021;9(1):132-150.e3. 29. Geba D, et al. J Drug Assess. 2021;10(1):51-56. 30. Mayo Clinic. Berotralstat (oral route). https://www.mayoclinic.org/drugs-supplements/berotralstat-oral-route/side-effects/drg-20506380?p=1. Accessed January 17, 2024. 31. Abdulkarim A, et al. Hereditary angioedema. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2023. Available from: https://www.ncbi.nlm.nih.gov/books/NBK482266/ 32. Angioedema Centers of Reference and Excellence. Who we are. https://acare-network.com. Accessed January 16, 2024. 33. US Hereditary Angioedema Association. https://www.haea.org/. Accessed January 16, 2024. 34. Hereditary Angioedema International. About HAEi. https://haei.org/about-haei/. Accessed January 16, 2024. 35. 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. 36. Allergy & Immunology Medical Center. Glossary of Allergy Terms. https://www.aimedcenter.com/patient-information/patient-education/glossary-of-terms/. Accessed January 19, 2024. 37. Healthline. What is a hematologist? https://www.healthline.com/health/what-is-a-hematologist. Accessed January 17, 2024. 38. 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.