F60 Noi-huntington – the hd youth project supported by LIRH foundation

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Abstract

Background

Many young people from the 700+ families served by LIRH reported a profound sense of isolation due to the fact that they do not feel like talking about their condition with friends, neither with teachers or with the boyfriend/girlfriend.

Objective

Setting up a national youth network to offer to children and young adults (no matter if they are affected or at-risk) the opportunity to know each other, to meet and talk with no shame and no fear and to develop HD educational programs.

Methods

Identification of the target (13 to 35 years old people); identification of a ‘funding group’– choice of a ‘group leader’; communication and networking.

Results

First Sept-2017 funding group was made up by 8 people. The second meeting in March 2018 was attended by 15 people. The network counts at present >30 people from 8 out of 20 Italian regions. The presentation video had more than 14.000 views in less than 10 days. A FB page, an Instagram Page and a Youtube Channel were launched.

Conclusions

Noi Huntington is the name that the funding group chosed to underline the need and the sense of belonging to the same community: NOI means WE. It is about to launch its own website and is planning several educational initiatives. This is a positive example of empowerment in the HD youth community.

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