Patient Advocacy Groups (PAG)

In Europe it is possible to join local patients’ associations, which were founded for those who are either directly or indirectly affected by HAE.

No information available.

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:

  • Providing professional information about the disease Hereditary angioedema and its treatment options
  • Providing information to the wider community
  • Improving patient-physician dialogue
  • Advocacy in favour of access to treatment
  • Cooperating with patient organizations focused on hereditary angioedema in the world

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:

  • Providing information about the condition by means of an internet site, brochures, medical passports, folders, and a newsletter
  • Exchanging experiences through contact with fellow sufferers
  • At least an annual member meeting with presentations from specialists and group discussions
  • Promoting scientific research
  • Following developments in the medical field

No information available.

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:

  • Providing professional information about the disease, Hereditary angioedema, and its treatment options
  • Providing information to the wider community, improving patient -physician dialogue
  • Advocating in favour of access to treatment
  • Cooperating with patient organizations focused on Hereditary angioedema across the world

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:

  • Facilitate exchanges between patients affected by this disease and promote the sharing of experiences
  • Improve patient information on developments in research and treatment for this disease
  • Raise awareness of this disease in medical circles
  • To encourage medical circles and pharmaceutical laboratories to develop new and better adapted treatments

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:

  • Raise awareness about the disease through its website, brochures, folders, and newsletter
  • Provide information about the disease and its treatment
  • Facilitate the exchange of experiences between those dealing with HAE
  • Organise a membership meeting at least once a year that includes presentations by specialists and group discussions
  • Promote scientific research
  • Follow developments in the field of medicine

The association has the following goals:

  • Committed to safeguarding and advancing the treatment of HAE disease
  • Disclosure of general information about HAE to those directly and/or indirectly affected
  • Promotion of the exchange of experiences between HAE sufferers and their relatives
  • Improving cooperation with doctors, clinics, and health insurance companies
  • Promotion of medical and psychosocial care, prevention, and advice
  • Education and public relations

The association helps to improve the quality of life of HAE sufferers and their relatives.

Association goals:

  • To be noticed and taken seriously with our suffering
  • To preserve our personal integrity
  • To lead a largely normal life.

Join the HAEi community24

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.

Other communities of interest:

Immunodeficiency UK25

Immunodeficiency UK supports individuals and families affected by a primary and secondary immunodeficiency, providing them with the knowledge needed to manage their condition effectively.

UK Primary Immune-deficiency Patient Support Charity (PIPs)26

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 UK27

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.

Patient tools:

  1. HAE UK – Living for today…Planning for tomorrow.
  2. HAE Vereinigung e.V. Selbsthilfegruppe in Deutschland.
  3. HAE Austria – Österreichische Selbsthilfegruppe für das Hereditäre Angioödem.
  4. HAE Scandinavia.
  5. Suomen HAE-yhdistys ry. 2022. Etusivu.
  6. HAE – Iceland.
  7. HAE-Vereinigung für die Schweiz.
  8. НАЕА България – Сдружение на хора, страдащи от наследствен ангиоедем. [Accessed 16 February 2022].
  9. HAE – Greece. 2022. HAE Greece. [online] Available at:
  10. Asociația Pacienților cu Angioedem Ereditar din România.
  11. Hae slovenija – hereditarni angioedem hae – slovenija.
  12. 2022.
  13. HAE Ireland
  14. HAE Italy
  15. HAE Portugal
  16. | Asociación Española de Asesores Fiscales.
  17. Belgium – HAE International (HAEi). 2022. (No direct website available)
  18. HAE Czech Republic
  19. Association of Hungarian Angioedema Patients: HANO.
  20. Angio Oedeem Verenining
  21. HAE Slovakia
  23. HAE Hrvastska
  24. HAE International
  25. Immunodeficiency UK.
  26. UK PIPs
  27. Rare Disease UK.