Health – Stargardt disease, another point of “view”
It is scheduled for Thursday September 3, 2015, at the “Wolf” classroom of Sapienza, University of Rome, in via Salaria 113, from 15 – at 18, A round table on the “Taco” project, the program of the “I accompany you” association financed by Bic Lazio for the creation of a website to put all the people interested directly and indirectly “on the net” by Stargard’s disease, an inheritance disease , which falls among the rare ones, which reduce visual acuteness and which manifests themselves in youth between 10 and 20 years.
Two news of the project created by the Youth Association of Social Promotion of the Province of Frosinone, I accompany you: the goal and the participatory planning.
The goal that has intended to be pursued and that we aim to achieve is to put in direct connection the experiences and research that doctors and patients go to mature to manage the problems that causes this disease positively. The intention is to build a “we”, which is based on solidarity that is counted to grow by overcoming the loneliness of the individual approach, and on which patients and their families can count. Great attention was therefore paid by the association to the theme of the network. In fact, it was found, as in all cases of still little known diseases, how vital to be able to have a network of interconnections that maintain those who suffer from this syndrome with the world of research, experts in multidisciplinary areas, companies, companies and associations.
The intention, also by exploiting all the channels of the Lazio youth association network “act” of which “I accompany you” is part, is therefore to strengthen the exchange of information, activate a direct comparison between different people who have an interest common, offer the opportunity to ask questions and get answers from competent people and share fears and hopes.
The second novelty lies in the mode of designing the tool: the website will, in fact, be the result of a participatory planning among all those who want to commit themselves to make a voluntary contribution to the realization of a tool that will be available to that “we” Then he will use it and will ran him.
The drafting of the project and the early stages of activities were conducted using, in fact, the methodology of training-intervention that has already involved both affected people, as some specialists in the sector, communication technicians, ergonomes, engineers, learning experts e web designer.
In the meeting of 3 September we plan to further broaden the number of those who will participate in the design.
The doctors who work in contact with patients, associations that operate in support of families, researchers interested in social phenomena concerning this reality, companies that develop useful aids and tools have been called to the round table guarantee a satisfactory quality of life of patients and the foundations that can support new research on the matter.
The meeting will allow to illustrate what has been done so far, to guide the next activities and to expand, with those who request it, the rose of the people involved in the realization of the project.