Our Mission
The Association of "Friends of Haemophilia O.N.L.U.S." in Palermo is active in our region for over 20 years and has gradually become a point of reference for the haemophilia community.
The greatest difficulties arise from the fact that the support centres are little attention from the reference Public Health, perhaps because they’re seen as "waste" of resources, now known to be precarious and unstable.
The Association allows and encourages dialogue between political institutions and health facilities, striving against the theory of savings that makes no distinctions and penalizes more and more the fundamental rights of the individual.
In Sicily haemophiliacs are about 500, almost evenly distributed between the two Centres of Reference one located in Palermo and one in Catania.
The association is promoting the organization of:
- Training courses on "Assistance to the haemophiliac patient: medical aspects, nursing, psychological and rehabilitation", to nurses and doctors in the area.
- Courses of self-treatment for patients.
A day organized in collaboration with the National Federation of Haemophilia, to join the "Project Puer" (project for a unique experience), tested on national territory, aimed at children, adolescents with haemophilia and their families. The purpose of the vent is to facilitate the matching of patients who share the same experience (suffering from a chronic coagulopathy) in order to reduce the sense of isolation sense and create network of solidarity and mutual self-help.
Activation, a few weeks ago, of a web portal, accessible to all but valuable for patients and their loved ones, with the guarantee of anonymity, will benefit from the advice of specialists online, as well as draw on a series of useful information to their care and mutual support of other patients or relatives, participating in discussion forums.
Activation, from nearly two months, of a "Counselling Centre for the haemophiliac patients and their families".
This project, proposed by Doc. Maria Vittoria Rizzo (one of the psychologists of the unit), who sees Doc. Mancuso as mentor, won the prestigious prize "Special Projects in Education Volunteering", as part of the Bayer Haemophilia Awards Program 2004.
The prize, consisting of an annual Scholarship was awarded to the same Doc. Rizzo at the International Congress of the World Haemophilia Federation, held in Bangkok (Thailand) on 18 to 23 October, 2005.
The activities, conducted in co operation with Doc. Maria Francesca Mansueto (another psychologist of the unit), intend to ensure users (children and their parents) by hosting a first listening session, especially when the communication of the diagnosis that places parents in a state of despair and loneliness. Also it aims to provide information and guidance through the documentation, supported by the website and other instruments available, through which it will be possible to direct people to the most appropriate forms of help.
The collection of needs is an important aspect of the Centre, by monitoring specific requests, will use them as an important source of data collection relevant to the design of interventions for psychological support, individual or family. A space is also devoted to parenting education to better address the disease.
Activation, from about two months, of a plan proposed by Doc. Mansueto, "From Cure to Care", funded by the Association of Friends of Haemophilia O.N.L.U.S. in Palermo, directed to the adolescent patients or late-adolescents.
The cooperation between the two psychologists and integration of activities under the two projects described above will allow taking charge of a large proportion of patients referred to the Centre, addressing simultaneously but in different ways, the many experiences that may occur at various stages of development.
Development is still ongoing of a new project of "Home Care", based entirely on voluntary service and at no cost to the SSN, mainly addressed to the chronically ill, especially children, persons with severe disabilities, which hopes to offer the opportunity to experience as much as possible the disease, in their own environment and among the loved ones.
The aim once again, to improve the quality of life, the maintenance of family ties and their involvement in the care, reducing the number of daily improper admissions (with the consequent reduction in support costs) clearly has many advantages, not least to reduce the risk of isolation.
