Vanessa Migliosi, former IFHOHYP President, was actively involved in GenDeaf project for three years (2002-2004) on behalf of IFHOHYP. Since 2002 IFHOHYP is involved in GENetic DEAFness (GENDEAF) project as a partner to produce a Bulletin of the European network on GENetic DEAFness.
Its main purpose is to inform patient organisations, patients, their relatives and friends about this new European initiative to raise awareness of the causes of inherited deafness and allied syndromes with the ultimate aim of constructing a basis for future treatments and improved rehabilitation.
The aim of the network is to bring patients, families and their associations closer to research in this field as well as researchers closer to patients' need for information.
GenDeaf News is targeted at patients, their families and medical personnel involved in genetical hearing impairment. It is written in lay language and, besides English, is also translated into Swedish, French, German and Italian.
GENDEAF NEWS is published on the Internet but Associations and patients' support groups that would like to include it in their journal or publications may do so, with the agreement of the Editorial Board, citing the source of information. The network objective is to inspire such initiatives throughout Europe. The consortium will collaborate with any other organisation which requesting authorisation for translating it into other languages.
There will be published three issues per year (2003 and 2004 – the whole duration of this project), so please check the website (www.gendeaf.org) and download the upcoming bulletins regularly. Contribute to its diffusion as well!
Vanessa Migliosi, molecular biologist and former IFHOHYP President
Links to articles written by Vanessa Migliosi:
GENDEAF Project (size: 29.5 KB)
The future of Genetics for hard of hearing (size: 38.5 KB)
The Monsters are Coming (size: 36.5 KB)