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If available, each entry below shows the contact details of
the organisation, some detailed information about its aims, contact details and a link
to their homepage.
HAE Range menu
International organisations
International organisations working on European or world level: HAE or rare diseases
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
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]
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
| Frequently inquired |
Author: Jerini AG
Source: HAE-Network Status: 3/08 This list is frequently updated. Please send us your comments or suggestions by e-mail. |
