|Saturday 26 April 2003|
IFHOHYP is involved in GENetic DEAFness (GENDEAF) project as member to produce a Bulletin of the European network on GENetic DEAFness.
It has been published the first issue (number 0) of the GenDeaf project bulletin in which this project is described in detail. 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 reguesting 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 of GENDEAF and download the upcoming bulletins regularly. Contribute to its diffusion as well!
Vanessa Migliosi, molecular biologist and IFHOHYP President