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About Hereditary Angioedema
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| In January 2008, leaders from the European HAE community met with CSL Behring representatives to discuss challenges and advances in diagnosis and treatment of HAE as well as current policy issues related to this rare disease.
This European HAE Dialogue is part of a series addressing healthcare-related topics, sponsored by CSL Behring for interested stakeholders in the communities we serve. |
| | Hereditary Angioedema (HAE) is a rare but serious inherited disease. The gene defect causes a deficiency of the plasma protein C1-Esterase-Inhibitor (C1-INH), the primary control protein for the complement system and for some other pathways regulating vascular permeability. Patients with HAE suffer swellings throughout the body that can be life-threatening. Often, concerned patients and even physicians misinterpret the clinical picture of the HAE as an allergic reaction. This results in postponed diagnosis and inappropriate treatment. The discussion focused on current issues surrounding HAE in Europe and highlighted medical as well as political topics including:
- Enhancing early diagnosis,
- Successful treatment models,
- Optimizing access to life-saving therapies for patients in need across the EU
In this context, the participants also stressed the importance of the upcoming official European Commission Communication on Rare Diseases, and especially the need for:
- Awareness and education campaigns,
- Developing EU-wide patient registries,
- Establishing national or regional centres of expertise and European reference networks.
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Symptoms and Diagnosis
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