ROMA (ITALPRESS) – On the occasion of the International Day of Malan Syndrome, ASSI Gulliver, a national association of reference for people with Sotos syndrome and Malan syndrome and their families, renews its commitment to raising awareness on an ultra-rare genetic disease through an interview with the Minister for Disabilities Alessandra Locatelli, made by the editor of Assi TV. Less than one in a million. This is the estimated prevalence of Malan syndrome, an ultra rare genetic disease, also known as Sotos 2, caused by a variant of the NFIX gene. A still little known condition that makes it essential to invest in research, early diagnosis and awareness, so that no family can face the path to a diagnosis alone. “The International Day of Malan Syndrome is an important opportunity to light the spotlight on a condition that is still little known and to reiterate how fundamental research, early diagnosis, support for families and a grip that always puts the person at the centre,” said Locatelli.
“The Project of Life is a fundamental cultural change: it means starting from the desires, abilities and aspirations of each person to build personalized paths that favor autonomy, participation and full citizenship. The experience of Assi TV – he added – tells us that when they are offered trust and opportunity, people demonstrate skills, professionalism and ability to actively contribute to the life of society”.
– Photo Ipa Agency –
(ITALPRESS).
