Contact: Giuseppina Pintori
Inversa Onlus was established in 2010 by a person with HS in response to the needs and difficulties of patients in managing this chronic and poorly known disease. The association deals with patient information and psychological support, to urge the scientific community, to follow the right institutional set-up in recognizing HS as a disabling chronic disease and spreading knowledge and conscience. For many years we have been working to meet patients. Inversa ONLUS combines everyone's experiences to find paths to live better even in the presence of such a difficult pathology.
Association Française pour la Recherche sur l'Hidrosadénite
Contact: Marie-France Bru-Daprés
A.F.R.H., founded on February 9th 2000, works in several areas linked to HS:
- Listening, information and support for patients and their families,
- Sensitization and information to the public opinion,
- Sensitization of health professionals to the value of early diagnosis and comprehensive patient care,
- Support for Medical Research,
- Support the scientific research,
- Support for the development of innovative treatments and at reasonable cost,
- Communications on the complications caused by the disease and their cost to the community,
- Mobilization of all the actors who can act in favor of the recognition and improvement of the care of patients.
La Maladie de Verneuil en Belgique asbl
Contact: Clotide Harvent HARVENT
The Patients' Association " la Maladie de Verneuil en Belgique"
exists since October 2nd, 2012.
La MVB Asbl has for main objectives:
- General raising awareness for the public opinion,
- Personalized support for patients and their families,
- Information and training for healthcare professionals to reduce the delay of diagnosis and improve the quality of care,
- defense of the rights of Patients with the Public Authorities, to facilitate the financial access to the care for the most fragile patients,
- Support the scientific research,
- Collaboration with the other Patients' Associations in Belgium and in Europe, in order to achieve these objectives.
Patientforeningen HS Danmark
Contact: Bente Villumsen
The Patients' Association HS Danmark was established in 2013 with the mission of making a difference for people with hidradenitis suppurativa (HS) in Denmark.
A dedicated board of seven persons work as volunteers for this mission.
The primary focus of HS Denmark is to raise awareness of HS among patients, health care professionals, and in society, including politicians.
We provide support and information about HS for patients, carry out awareness campaigns, and arrange information meetings in cooperation with HS specialists.
HS Danmark cooperates with leading HS scientists in research about HS, and with other relevant national and international organisations.
Contact: Hèléne Raynal
Since 2009, the French association SOLIDARITE VERNEUIL, in close collaboration with dermatologists, surgeons and healthcare professionals concerned with hidradenitis suppurativa (or maladie de Verneuil), is directing and accompanying patients and their families throughout their care path, all over the French territory.
The action of SOLIDARITE VERNEUIL is organized around 4 fundamental axes:
- Orientation (improve care) -> Refer patients to the competent professionals in their sector,
- Education (reduce diagnostic delay) -> Identify patients for better screening,
- Home (preventing suicidal acts) -> Take charge of the isolated patients,
- Accompaniment (to facilitate access to care) -> offer administrative, financial and logistical aids to patients,
Asociación de Enfermos de Hidrosadenitis - ASENDHI
Contact: Teresa Tejero Amoedo
The Asociación de Enfermos de Hidrosadenitis (ASENDHI) is a Spanish non-profit organization, founded in 2008 and listed on the National Register of Associations.
The aim of ASENDHI is to promote the welfare of people affected by this disease, increasing knowledge and research to develop specific treatments and assist in the dissemination of everything related to this illness.
The funding of our activity is conducted through membership fees and other private contributions.