The wellbeing of haemophiliacs is made up of many elements. Some, like medical help and drugs, are obvious and indisputable; others are less conspicuous and more intangible, first and foremost an environment where the family resists the temptation to focus on the disease and is able to devote care and attention to the person. In this way the illness is seen for what it is, in other words an organic disorder, so it does not become the key feature of an entire life.

For this to happen, we must ensure that the person with hemophilia and their family members feel comfortable in the community, fully integrated and accepted, and that they see discussion of the condition not necessarily as a private matter to be dealt with in the safety of home, but one that can be shared even with people who have no direct experience of hemophilia.

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FONDAZIONE PARACELSO HAS IDENTIFIED THREE CRUCIAL AREAS OF ASSISTANCE:

  • Standardising the levels of medical assistance throughout the country. The unevenness of services and aid quality is clearly shown in a survey conducted by Fondazione Paracelso and presented at the 13th Triennial Congress on the Clinical and Social Problems of Hemophilia (Milan 2008): too many kilometres travelled to get to the Hemophilia Centre, too many trips, sometimes to a different Region, in search of what is not available close to home. To give everyone access to first-class essential care services close to where they live, we have set up Bando 100k to publicise and support initiatives that have a measurable direct effect on patients and families, in association with the work of the Hemophilia Centres, and we have guaranteed up to 100,000 € funding over three years for each project;
  • assistance to the families of haemophilic children. Today, despite the significant expansion of possible therapies, living with this disorder still means too much anxiety and too many concerns. The moment of diagnosis and the months that follow are emotionally demanding for the family as it is forced to face up to fears and uncertainties. Our commitment to the families becomes reality in the pilot project We start young, which provides for a family mediator to assist the whole household from the moment of diagnosis and through the early years of the child's life, supporting the parents and other family members, informing them and helping them to deal both practically and emotionally with all the needs that will arise;
  • increasing the awareness and visibility of hemophilia among the general public. Fear of marginalisation makes many people with hemophilia reluctant to talk about their condition, but often that fear is unjustified. There is very little information in circulation, so the risk is that those who attempt to talk about it and find they have to provide complicated medical explanations will be discouraged. Resisting social invisibility is something we consider a crucial part of the wellbeing of anyone who has to reckon with their own hemophilia or that of a son, a husband, a brother, a father. In order to add to the correct information and to education about the disease, we periodically organise public events and initiatives, including an annual symposium on 17 April, World Hemophilia Day.


FONDAZIONE PARACELSO HAS ESTABLISHED TWO COLLABORATIVE AID PROJECTS FOR HAEMOPHILIACS WHO NEED TO USE ASSISTED REPRODUCTION TECHNIQUES OR ORTHOPAEDIC SURGERY
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  • the Cabbages and Storks project is aimed at couples with a haemophilic and HIV positive male partner, who wish to have a child without the risk of the virus being transmitted to the female partner and the baby. Working with the specialists, we accompany the couples on their path to parenthood with the utmost care and attention;
  • the Step by Step project is based on collaboration with the orthopaedic surgery team at the Policlinico general hospital in Milan, where we contribute participation and expertise – essential requirements in order to follow and support the progress of haemophilic patients who undergo surgery.


FONDAZIONE PARACELSO HAS CREATED AND BEGUN PUTTING INTO ACTION A HUMANITARIAN AID PROJECT
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  • the Sans frontières project is being carried out abroad, in developing countries, and in Italy. In keeping with our ethical values and our social mission, we will identify needs, accept requests for help and find solutions for people with hemophilia who, for a variety of reasons, find themselves in a critical situation or in emergency circumstances connected with social problems.


 

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We all try our best to do our duty, aware of the difficulties this involves, knowing that difficulties inspire patience and
patience generates integrity and integrity produces hope and hope never betrays.
Father Uriel Molina

Fondazione Paracelso Onlus - Via Veratti 2 - 20155 Milano - Tel +39 02 33004126 - privacy - credits