On the occasion of World Hereditary Angioedema Day (May 16 / Ordibehesht 27), the Primary Immunodeficiency Patients Advocacy Association, in collaboration with the Immunology, Asthma, and Allergy Research Institute (IAARI), organized a special hybrid (in-person and online) conference for patients and their families titled:
“Challenges and Solutions in the Lives of Hereditary Angioedema Patients.”
Held on Thursday, May 16, 2025, at Dr. Farhudi Hall of IAARI, the event brought together patients, families, physicians, and specialists in the field of immunology.
Opening Remarks and Goals
Ms. Marziyeh Salek, CEO of the Association, opened the event by welcoming all attendees and emphasizing the significance of raising awareness on this rare yet serious condition. She explained that the main goal of the conference was to explore practical ways to improve the daily lives of people living with hereditary angioedema (HAE), through better understanding, treatment, and emotional support.
Keynote Sessions
Dr. Fazlollahi, clinical immunologist, spoke about the diagnosis and treatment of hereditary angioedema.
Dr. Zahra Alizadeh, PhD in Biomedical Sciences, discussed the importance of genetic testing in the diagnosis and follow-up of HAE patients.
Dr. Parichehr Bahreini, PharmD, shared insights about HAE medications, their side effects, and the correct methods of usage.
The event concluded with a live Q&A session, where both in-person and virtual participants had the chance to ask questions and share their experiences.
About Hereditary Angioedema
Hereditary angioedema is a rare form of primary immunodeficiency caused by a deficiency or malfunction of the C1 inhibitor protein, leading to painful and potentially life-threatening swellings in various parts of the body—especially the face, abdomen, and airways.
Triggers such as physical trauma, stress, or medical procedures can cause severe attacks. Therefore, in addition to regular treatment, patients need immediate access to emergency medications during acute episodes.
One of the main therapies, C1 inhibitor concentrate, is derived from donor plasma and is very expensive. Due to the efforts of IAARI and the Association, this medication has been imported into the country in limited quantities to assist patients in need.
However, lack of insurance coverage remains a major challenge. Medications such as Danazol and Tranexamic acid are not always readily available, further complicating treatment plans for patients.
A Step Toward Better Quality of Life
This conference aimed to empower patients and their families with up-to-date knowledge, practical tools, and community support. With proper treatment and increased awareness, individuals living with HAE can enjoy a better quality of life.
The Primary Immunodeficiency Patients Advocacy Association has been officially operating for over six years at IAARI, actively supporting patients through education, advocacy, and access to care.
Holding a conference on the challenges and solutions in the lives of patients with hereditary angioedema.
