HAEi is the international umbrella organisation for the world’s Hereditary Angioedema (HAE) patient groups. Keep in touch with other HAE patients around the world, and check what international events are coming up. Go to HAEi.
In Europe it is possible to join local patients’ associations, which were founded for those who are either directly or indirectly affected by HAE.
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The Polish Association for Help for Patients with Angioedema is a national organisation working to improve the quality of life of patients diagnosed with HAE and to increase social awareness of the disease.
The civic association informs patients how to live with this disease. It provides basic information about the disease and current treatment options. It supports the building of a partnership between doctor and patient, provides opportunities for mutual meetings, exchange of experiences and moral support.
Objectives of the association:
The Association for Hereditary is a patient association and was founded for people who are directly or indirectly involved with HAE.
The association is engaged in:
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No information available.
The HANO Patients’ Organization, established for the benefit of patients with hereditary angioneurotic oedema, is responsible for maintaining health, disease prevention, social activities, organizing courses and gathering experiences, exchanging knowledge, contacting, and maintaining contacts with similar organisations, professional bodies, and authorities, with patient care centres, support for work in the field of research and application, within the national and international framework.
No information available.
Goals of the association:
No information available.
The Association was founded in 1998 .The information on the association website includes a description of the current status of the disease and information on current treatment options.
The Association of Patients with Hereditary Angioedema (ADAH) was created in 2010. The association’s purpose is to disseminate knowledge about Hereditary Angioedema; to provide updated information on the pathology, available treatments and ongoing research projects to patients and their families and health professionals
The association, a voluntary and non-profit organisation, was established in 1980.
The association aims to spread awareness of the disease in order to allow a correct diagnosis; support and facilitate the access of all patients to appropriate therapies; collaborate in the organisation of care for patients with hereditary angioedema; promote medical meetings, conferences and congresses at national and international level, to promote exchange of information.
HAE Ireland is a community for patients with Hereditary Angioedema (HAE) and all other types of Angioedema, their families, medical professionals, and anyone else who would like to connect with others to learn about HAE and Angioedema, help educate and create awareness in Ireland.
The aim is to educate to reduce times to diagnosis, create awareness of HAE and other types of Angioedema, and gain access to modern treatments for patients living in Ireland.
The purpose of the association is to:
The association meets twice a year across France during meetings bringing together patients, specialized doctors, and volunteers from the association.
The organisation provides general information for the HAE patients.
The association aims to inform both patients and doctors, to make known this rare disease, as the risk of a misdiagnosis or late diagnosis can be fatal and, most importantly, to provide information on the benefits from individual treatment plan.
The organisation is a support group of patients suffering from Hereditary & Acquired Angioedema and our goal is to raise awareness about the disease, both among patients and their families, but also in the medical world and the general public, in order to create a favourable environment for improving the lives of patients in Greece and Cyprus.
Non-profit association “NAEA”is a non-partisan, voluntary, independent association of people suffering from hereditary angioedema, members of their families and third parties. It carries out activities to benefit the public by protecting the rights and interests of persons suffering from hereditary angioedema. It carries out activities to support , social integration, personal realisation and expression of patients in various spheres of public life, as well as for the implementation of educational policy on the disease and its treatment. It provides the HAE community with a personalised network to protect and uphold the rights and interests of all patients, as well as a wide range of services to help them lead normal lives.
Patient association for HAE sufferers, family members, friends, acquaintances, and doctors. It aims to improve the living conditions of those affected by HAE.
The association provides information on hereditary angioedema, research on the disease and the treatment options available, whether for those suffering from the disease and their relatives.
The primary purpose of the association is to promote access to information on hereditary angioedema (HAE / HANE) to HAE patients, patients’ relatives, physicians, and hospitals, and thus to develop and improve integrated care for HAE patients and to eliminate potential prejudices and negative attitudes.
The association also aims to promote networking between people with hereditary angioedema. Support is also provided for parents, spouses, children, and other family members (e.g., siblings and grandparents) of hereditary angioedema.
HAE Scandinavia has become a reality to support patients and their families in Denmark, Norway, and Sweden in the best possible way. HAE Scandinavia has an important role in building a strong network of doctors in Scandinavia who can make even better use of the available treatments to the benefit of patients.
This association works to:
The association has the following goals:
The association helps to improve the quality of life of HAE sufferers and their relatives.
Association goals:
HAEi is the international umbrella organisation for the world’s Hereditary Angioedema (HAE) patient groups. Keep in touch with other HAE patients around the world, and check what international events are coming up. Go to HAEi.
Immunodeficiency UK supports individuals and families affected by a primary and secondary immunodeficiency, providing them with the knowledge needed to manage their condition effectively.
The UK Primary Immune-deficiency Patient Support Charity, PIPs ensures that anyone with a primary immune deficiency or primary antibody deficiency has somewhere to turn to for advice and support.
Rare Disease UK is the national campaign for people with rare diseases and all who support them. It provides a united voice for the rare disease community by capturing the experiences of patients and families. It is focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support.