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Promotion of interest, advice and support of people with rare
chromosome-disorders... What does that mean exactly. For what can you call in
the Help-Station?
- Searching on the Internet
- Advice about organisation plans
- Advice about the organisation of meetings
- Practical support during meetings
- Presentations and workshops designed for specific purposes
- Publications
- Developing (international) projects
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- Contacts
- helping collecting information through the Internet
- for parents of children with rare chromosome disorders, since the
start of the website of 11q in January 1997 - in The Netherlands and
elsewhere
- overviews and Internet-links for the 11q-network and the Chromosome
Help-Station
- exchanging of information with organisations such as
- Unique, Leone eV, Unique-Denmark, Zeldzaam/FVO, Eurordis,
werkgroep zeldzame aandoeningen, 11q Research and Resource Group,
CDO
- Advice
- for instance: brainstorm 'Zeldzaam', advice Dutch group - Wolf Hirschhorn conference 2002, collecting practical hints like this
consent-form, member of working group
'website'
of the steering committee for Orphan Drugs
- Organisation and support meetings
- first European meeting of general and European support groups for Rare
Chromosome Disorders, 15 October 2003, Parijs/Evry. Co-operation with
Valentin Apac/France.
- 4 international conferences for the
11q network (preparation,
organisation, direction)
- practical support European conference of the Dutch parent
network Wolf-Hirschhorn (FVO),
October 2002. Have a look at the guestbook.
- chair discussion group 'Niemand weet wat ik heb', at the Workshop 'Beter weten is beter
worden', September 21 2002, Ede, the Netherlands. Organised by the
working group for Rare Diseases of the VSOP
and CG-Raad.
- member of working group Zeldzaam,
for instance for Dutch meeting, May 2003
- Lectures and workshops
- 'Multidisciplinaire zorg en ouder/patiëntenorganisaties', Association
of Dutch paediatricians. 27 October 2005.
- No code - no name - no existence, Luxemburg, 22 June 2005, at the
European Conference of
Rare Diseases, go to the webcast
- Workshop: 'een kijkje in de keuken van een gezin met een gehandicapt
kind', vrijwilligers Wigwam in Dronten, 25 juni 2005 (workshop for
holiday-volunteers)
- European Rare
Chromosomes United, Poznan 1 May 2004. See Eurochromnet.
- An example in partnership: the European Chromosome
11q Network (Co-operation between parents, researchers and
geneticists); Presentation at the workshop Civil Rights, Regional
Conference Rehabilitation International, November 12, 2002, Aachen,
Germany
- Creating an European network for 11q; Session at the European
Conference on Rare Disorders and Disabilities, May 19, 2001, Copenhagen-Denmark
- lectures at the conferences of the European Chromosome 11Q Network
- publications
- Eurochromnet Newsletter, from January 2005
- Editor of 'Zelden' nrs 1/3, e-mail Newsletter of the Working Group for Rare
Diseases and Disorders.
- websites
- Erik
Wedershoven, April 2005 - April 2007
- Zeldzaam
(sorry, just Dutch), website for rare diseases, May 2004
- IALE,
international landscape ecologists, 2003
- Chromosome Help-Station, April 2002:
- 11q, January
1997
- articles in Newsmagazines parent support groups, for instance:
- Theme-page at
the Dutch Ouders-Online, June 7, 2002
- reports conferences 11q (1998,
2000, 2002)
- press and announcements
- Research/projects
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