“Patients are now increasingly aware and expert about their illness. And this is important because by managing to extract the value of their journey they are then able to transfer it to social and healthcare workers, assistance and care, influencing and directing future choices. It is It is important to involve the patient in the therapeutic path because, precisely on the basis of the experience and the sensations and emotions that the patient can transfer, it is possible to orient and modify the path of assistance and treatment and, possibly, also of research”. Thus Fulvia Massimelli, president of Aisla, the Italian amyotrophic lateral sclerosis association, comments on the results of the ‘What Als Wants’ study, the register that collects data on the experiences of patients with amyotrophic lateral sclerosis (ALS) carried out by the Mario Negri Institute in collaboration with Aisla, speaking in a talk broadcast on Adnkronos.com.
On the role of the association and how it can be supported, Massimelli recalls that “you can help Aisla by subscribing to 5 per 1000. It is a free action because all you need to do is subscribe with your tax return – he explains – It is a small gesture which however For Aisla it can make a huge difference.” Furthermore, “on the second Sunday of September there is the national Aisla day, then by participating in events throughout Italy, donating with a small contribution. Everything that is collected – specifies Massimelli – is destined for the 4 main objectives of Aisla: training, information and communication, assistance and research. Last year, for assistance alone – he concludes – Aisla donated approximately 600 thousand euros directly to families and 1 million for research”.
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