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This list contains weblinks to websites dealing with HAE or related issues. The list is frequently updated. Please send us your comments and suggestions by e-mail.
The following websites are operated by other parties. We do not assume any responsibility or liability for the legality, accuracy and completeness of their content.
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Hereditary angioedema
HAE Weblinks
Clinical trials - Website
ClinicalTrials.gov provides regularly updated information about publicly and privately supported clinical research in human volunteers. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and telephone numbers for more details. The link underneath leads to a live search on all HAE-related entries in the clinical trials database.Clinical trials listed on HAE clinicaltrials.gov
EURORDIS
European Organisation for Rare Diseases (Association européenne pour les maladies rares)
The European Organisation for Rare Diseases, EURORDIS, is a patient-driven alliance of patient organisations and individuals active in the field of rare diseases.Eurordis’ mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives.
Contact:
Eurordis Plateforme Maladies Rares
Anja Helm (Deutsch, Español, Français)
102, rue Didot
FR-75014 Paris
France
Tel: +33 (1) 56.53.52.10
Fax: +33 (1) 56.53.52.15
E-Mail: anja.helm@eurordis.org
EURORDIS - www.eurordis.org
HAE register
Hereditary Angioedema International
The HAE register is the result of a collaboration between a number of experts based in Europe, led by Prof. Marco Cicardi of Milan. The goal of the register is to develop a better understanding of the current benchmarks of care for Hereditary Angioedema (HAE), and the outcomes that result, in order to improve the ways in which sufferers are treated. It stores anonymous data on patients being treated for HAE.
Homepage: www.haeregister.org [special permission required]
HAEI
Hereditary Angioedema International
HAEI – International Patient Organization for C1 inhibitor Deficiencies - is a global organization dedicated to raising awareness of C1 inhibitor deficiencies around the world. It is a non-profit international network of national HAE patient associations.HAEI is established to promote co-operation, co-ordination and information sharing between HAE specialists and national HAE patient associations in order to help facilitate the effective diagnosis and management of HAE throughout the world. Our purpose is to join the efforts and experience of the global HAE community to achieve optimal standards of care and treatment for all those patients affected by HAE.
Contact:
HAEI - International Patient Organization for C1 Inhibitor Deficiencies
12, rue des 4 Églises
FR-54000 Nancy
France
Email: info@haei.org
HAEI - www.haei.org
ICD 9/10 Codes for: Hereditary Angioedema
International Classification of Diseases (ICD)
The ICD has become the international standard diagnostic classification for all general epidemiological and many health management purposes.2007 ICD-9-CM Volume 1 Diagnosis Codes Home > Endocrine, Nutritional And Metabolic Diseases, And Immunity Disorders 240-279 > Other Metabolic Disorders And Immunity Disorders 270-279 > Other And Unspecified Disorders Of Metabolism 277.* (Hereditary Angioedema = 277.6)
2006 ICD-10: D50-D89: Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism - D80-D89: Certain disorders involving the immune mechanism - D84.1: Defects in the complement system . C1 esterase inhibitor [C1-INH] deficiency
ICD 9: Hereditary Angioedema
Orphanet
Orphan Drug Information Database
Database on rare diseases and orphan drugs. Currently covering 3713 rare diseases [12/06]. Information is available in German, English, French, Italian, Portuguese, and Spanish.Orphanet - www.orpha.net
Wikipedia entry: Bradykinin/-Receptor
Public domain internet encyclopaedia
Wikipedia [3/08]: Bradykinin is a physiologically and pharmacologically active peptide of the kinin group of proteins, consisting of nine amino acids. Bradykinin is a potent endothelium-dependent vasodilator [...]. In mammals, two types of bradykinin receptors are known: The B1 receptor is only expressed as a result of tissue injury, and is presumed to play a role in chronic pain. Most recently, this receptor has been described to play a role in inflammation. The B2 receptor is constitutively active and participates in bradykinin's vasodilatory role.Full Wikipedia entry: Bradykinin
Wikipedia entry: Complement system
Public domain internet encyclopaedia
Wikipedia [3/08]: The complement system consists of a number of small proteins found in the blood, normally circulating as inactive zymogens. When stimulated by one of several triggers, proteases in the system cleave specific proteins to release cytokines and initiate an amplifying cascade of further cleavages. The end result of this activation cascade is massive amplification of the response and activation of the cell-killing membrane attack complex. Over 20 proteins and protein fragments make up the complement system, including serum proteins, serosal proteins, and cell membrane receptors. These proteins are synthesized mainly in the liver, and they account for about 5% of the globulin fraction of blood serum.
Full Wikipedia entry: Complement system
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Author: Jerini AG
Source: HAE-Network Status: 3/08 This list is frequently updated. Please send us your comments and suggestions by e-mail. |
