Hereditary Angioedema (HAE) Awareness Programme

Please note - The Hereditary Angioedema (HAE) Awareness Programme (www.hae-awareness.net) is for Doctors and other Healthcare Professionals. Enter the HAE Awareness Programme.

Hereditary angioedema (HAE) is a rare genetic disorder characterised by acute attacks of oedema.¹ It affects between one in 10,000 and one in 50,000 people, and is caused by a deficiency or a dysfunction of the C1-esterase inhibitor (C1-INH) protein.²

Symptoms of HAE can include swelling in the hands, feet, face, genitals, abdomen and larynx. Patients who have abdominal attacks of HAE can experience episodes of severe pain, diarrhoea, nausea and vomiting as a result of swelling of the intestinal wall.¹ HAE has a negative impact on patients’ quality of life and has been associated with an average of 3.2 days of missed work per HAE attack.³ HAE attacks that involve the face and throat can result in airway closure, asphyxiation and, if untreated, potentially death. This causes understandable anxiety among patients and treating physicians.

Despite these effects on patients, HAE remains a condition that is still generally not well understood by many healthcare professionals (HCPs). Owing to the lack of awareness among HCPs and the similarity of HAE symptoms with other conditions, patients typically remain undiagnosed until their mid-20s despite symptoms beginning in their first decade of life.⁴

The HAE Awareness Programme is a new and unique e-learning initiative developed by an Editorial Board of HAE Experts and supported by an unrestricted educational grant from CSL Behring Ltd.

Accessible at www.hae-awareness.net, the programme aims to improve standards of care for HAE patients and facilitate more prompt and effective treatment by increasing awareness of HAE among physicians and addressing the unmet needs of patients with this condition.

The HAE Awareness programme has been designed to meet the educational needs of physicians involved in the care and treatment of HAE patients, in particular immunologists, paediatricians, acute care physicians, dermatologists and gastroenterologists. It contains the latest information about HAE and provides tailored educational content and interactive case studies. Upon entry to the website, physicians choose their speciality and are then guided through the content and case studies that are most appropriate to their clinical practice. HCPs completing the training will obtain Continuing Professional Development (CPD) credit recognised by the Royal College of Physicians.

Enter the HAE Awareness Programme

Key search terms:
Hereditary angio-oedema, angioedema, C1 esterase inhibitor, C1 INH, C1 inhibitor deficiency, C1-INH deficiency, HAE type 1, HAE type 2, plasma concentrate, recombinant C1-INH, FFP, anti-fibrinolytics, attenuated androgens, Berinert, Firazyr, icatibant, Cetor, Cinryze, Rhucin, Kalbitor, ecallantide, tranexamic acid, danazol, oxandrolone, stanozolol, bradykinin, kallikrein, asphyxiation, dental surgery, hereditary angioneurotic oedema, nonhereditary angioneurotic oedema, urticaria, PreHAEAT.

References:
1. Agostoni A, Aygoren-Pursun E, Binkley KE, et al. Hereditary and acquired angioedema: problems and progress: proceedings of the third C1 esterase inhibitor deficiency workshop and beyond. J Allergy Clin Immunol. 2004;114(Suppl 3):S51–S131.
2. Bouillet L, Longhurst H, Boccon-Gibod I, et al. Disease expression in women with hereditary angioedema. Am J Obstet Gynecol. 2008;199(5):484–7.
3. Wilson DA, Castaldo AJ, Vernon MK, et al. Effects of hereditary angioedema: health-related quality of life, depression, productivity, and social consequences. J Allergy Clin Immunol. 2009;123(Suppl 1):S142.
4. Zingale LC, Bork K, Farkas H, et al. Poster 1079: The European register of hereditary angioedema: experience and preliminary results. J Allergy Clin Immunol. 2007;119(Suppl 1):S276.