by Peter Palmer
The proposed formation of the EUSN was triggered by the "EUROPEAN USHER SYNDROME STUDY GROUP" (EUSSG) meeting in Madrid in July 97 who asked a group of volunteers to meet in order to establish a NETWORK for people in EUROPE with Usher Syndrome.
The first meeting of the EUSWG was held in Copenhagen, Denmark in January 98, followed by the second meeting in Nürnberg in September 98.
At the first meeting in Copenhagen, we looked at the different ways a NETWORKcould help people with Ushers. Included in the points discussed were Creating Awareness in Europe, Collecting and Distributing Information, Training and Education, Diagnostics and Assessment, Research, Communication, Fund raising, meetings and Conferences, Electronic Communication systems, Support and Backup for the National Usher groups and "help Lines".
The second meeting in Nürnberg looked at the ORGANISATION and STRUCTURE of the proposed NETWORK. We discussed Aims and Objectives, Organisation, regulations, Election of the Board, Establishment of a Secretariat, Recruitment of Organisations and Members.
The third meeting in Manchester, England on 6 March 99 discussed amongst other things The Constitution, Structure, Formation of Management Committee, Future Relations of EUSN and Fund raising.
It was decided to proceed with the Formation of a EUROPEAN USHER
SYNDROME NETWORK (EUSN) but to approach it with caution. We would not
have a comprehensive Constitution , at this stage, that may
restrict our activities, but have broad based AIMS and OBJECTIVES
that would give us a clear direction in which to go forward, yet
allowing us to adjust to the requirements of the Network as it grows
and develops.
We are looking into the possibility of a EUROPEAN CONFERENCE sometime in the later part of the year 2001 to present the newly formed EUSN. We hope to work closely with EdbN and other organisations.
We are grateful to the EUROPEAN DEAFBLIND NETWORK for it's help
and support so far, we hope this will continue. Our thanks also to
SENSE and
the EUROPEAN USHER SYNDROME STUDY GROUP for their help.
We realise there is a lot of hard work ahead and there will be
more "Midnight Oil" to burn with a few "Mountains to
climb" but we are certain we have the
Expertise,
Determination, Effort and Enthusiasm needed to complete this project
and make a success of it for the sake of people with Usher Syndrome
throughout Europe.
PETER PALMER - Co-ordinator EUSN.
Email:
Peter.Palmer@btinternet.com
Telephone : England +44 (0) 1255 677906
Fax +44 : (0) 1255
852616
* represents members of the Conference Planning Team
EUSN Chair:
"Peter Palmer" <Peter.Palmer@btinternet.com>
EUSN Secretary:
*"Carol Brill Doran" <doranbri@indigo.ie>
"Stephanie
Schaerer" <stephanie.schaerer@DLR.de>
"Russ Palmer" <russ.palmer@btinternet.com>
"Riitta Lahtinen" <riitta.lahtinen@kolumbus.fi>
"Peter Ryberg" <p-ryberg@internet.dk>
"Marisol Brioso" <culmasur@mx3.redestb.es>
"Jean Jacques Fraysinnet" <social@retina-france.asso.fr>
*"Christina Fasser" <cfasser@e-link.ch>
"Barbara Suchert" <rbs@7fun.de>
"Vivi Andersen" <vivi_andersen@mail.tele.dk>
*"Charlotte van de Molengraft" <cvdmolengraft@elnet.nl>
"Patrizia Ceccarani" <cdfilod@imar.net>
"Robert Aguirre" <robert.aguirre@wanadoo.fr>
*"Liz Duncan" <Liz@acquired.freeserve.co.uk>
*"Marylin Kilsby" <mkilsby@sense.org.uk>
*"Miriam Bruggemann Winter” <janbrugg@euronet.nl>
"Rainald von Gizycki" <RainaldvonGizycki@compuserve.com>
We are also in contact with the following people but they are not part of the EUSN:
“Anneke
Balder” <A.Balder@sdg-lbt.demon.nl>
“Lex / Ann Grandia / Testrup” <annth@post3.tele.dk>
“William Green” <green.lfo@usa.net>
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