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The Association

AISS - Italian Shwachman Syndrome Association is a non-profit association, with no party affiliation or political links of any sort, created by a small group of parents whose children have SDS.

Working to raise awareness of SDS, AISS is democratically organised and refuses any form of discrimination related to language, religion, nationality, ideology or sex.

AISS works in close collaboration with a Scientific Advisory Committee, recognising the importance of joint efforts by parents and doctors to ensure progress in knowledge and treatment of the disease.

Aims

  • Ensure that national and local government, public and private sector organisations, citizens and other groups or individuals are aware of the problems faced by people with SDS, promoting public and private measures to develop scientific, epidemiological and genetic research as the necessary basis for any actions against the syndrome, while also encouraging the conviction that its management and treatment must ultimately be based on therapy of the underlying condition, not merely of its symptoms;
  • Promote local and national legislative measures, in favour of individuals with SDS and of public services providing full assistance for patients and their families;
  • Directly or indirectly support SDS patients and their families by doing everything possible with a view to ready availability of treatment, as well as ensuring all essential services for contacts and appointments with dedicated facilities;
  • Promote, and provide financial support for, SDS research projects and specific care programmes;
  • Promote and organise events (concerts, plays, sports events, community activities, etc.), to enhance awareness of the Association's aims and raise funds.
These activities can be run in conjunction with other charities and/or voluntary organisations.