HOW WE ARE
AISAC, was founded in 1987, and it is mainly dedicated to the study of Achondroplasia and, more generally, to the problems originating from short stature. It is a non-profit association, created by a group of parents who, after years of individual initiatives and efforts, have decided to set up a legally recognized organization. The head office is located in Milan, Italy, but the Association is active on the whole Italian territory, in coordination and cooperation with other national and international Associations and organizations. The Association has 700 achondroplasic members (180 children aged less than 10 years), as well as approximately 589 doctors, who act as advisors, and 776 parents and friends.
AISAC's AREAS OF ACTIVITY
In the sanitary area AISAC.'s objective is to improve clinical efficiency and to emphasize the importance of the relationship between doctor and patient, for the final purpose of obtaining total support to the individual and to hisfamily.
In the social area AISAC's objective is to bring awareness to the problems related to diversity, facing all the issues deriving from it and consequently allowing short stature individuals "to reach" and to avoid the permanent risk of “disappearing", particularly nowadays, when "to appear seems more important than to be".
In the psychological and personal relations area, with the objective of removing general indifference and prejudices and also providing support to the relational problems of each individual.
In the scientific research area, AISAC objective is to promote and finance research directly, with the awareness that achondroplasia, being a rare disease affecting "only" 5000 individuals in Italy, will hardly stimulate the interest of researchers or pharmaceutical companies, since it is not economically profitable.
AISAC's mission is to face the problems of achondroplasia (a form of dismorphic dwarfism) in all its aspects and provide support as a reference point for short stature individuals and their families, operating in the sanitary area, in the psychological, personal and social relation area, as well as in the scientific research area.
ACCESS TO INFORMATION:
- Collection and classification of medical and scientific reports and articles, also concerning psychological and relation problems of short stature individuals.
- Publication of a list of Medical Centres, highly qualified from the clinical, diagnostic, rehabilitation and orthopoedic standpoint.
- Preparation of a list of hospitals where limb lengthening surgery is performed.
- Evaluation and analysis of results of all the tests being performed in Italy and abroad, in order to avoid achondroplasic people to be involved in dishonest medical practices.
- Cooperation with Italian, European and international centres involved in research projects.
- Editing and distribution of publications.
EPIDEMIOLOGIC STUDIES AND RESEARCHES:
AISAC is constantly updating the Report on Achondroplasia, which monitors statistical data about skeletal displasias, as well as medical treatment and social requirements of affected persons.
AISAC also spreads this type of information and monitors the implementation of any proposed project.
AISAC also participates in the genetic research programs being implemented in many countries; it cooperates with paediatricians of the clinic-genetics group of study; it supports a scientific research project.
AISAC has carried out five investigations about the quality of life of its members, namely:
1997 - "Give voice to those who know" - Achondroplasia seen by those who live it (Guided interviews to 40 children);
1998 - "Voices of the parents" - Achondroplasia seen by those who live it. (Guided interviews to 40 families).
2001 - "The quality of life of achondroplasic people today".
2002 - "How to prevent that the whole family is affected by the disease.” (Guided interviews to 60 families and 30 doctors about how essential is the first communication about the child’s birth defect).
2003/2004 - "Limbs lenghtening" (Guided interviews to 30 parents and their child during surgery path).
DIRECT SUPPORT TO SUBJECTS AFFECTED BY THE DISEASES AND TO THEIR FAMILIES:
The association can provide specialized medical teams for diagnoses, genetic advice and support in the social relationship field; it follows and supports achondroplasic people in their lives; it offers the opportunity individual interviews, parents meetings, group debates, information service.
ACCESS TO INFORMATION AND SPREADING OF KNOWLEDGE.
The association promotes and carries out initiatives, participates in conventions in Italy and abroad, it is member of national and international associations, such as: Eurordis, EGF, IGF, CNV; it is ordinary member of LEDHA – Alliance for the Rights of the Disabled; it cooperates with Mario Negri Institute, Clinical Genetics Group of Paediatrics Society, Health High Institute, Unimib Development Psychology Department; it has carried out the II Congress about Achondroplasia: "The measure of man - present and future sceneries".
AISAC is also a centre of training for graduates in Psychology from Catholic University of Milan.
THERE IS SOMETHING GREAT IN EACH OF US:
This is AISAC's slogan today.
AISAC is dedicated to fight against prejudices and discriminations regarding the capabilities of the "diverse".