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http://madelung.hyves.nl/ - A Dutch so called hyve which kind of a Dutch meeting place where everybody can leave messages, pictures and video's. And you can even start polls. Maybe this might be something for the English speaking members as well, to show pictures if needed. However I did not know how to make it internationally. Dit is een Nederlandse zogenaamde Hyve (Bijenkorf), waar je makkelijk berichtjes, foto's en filmpjes kunt neerzetten. Ook kun je polls starten.
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http://madelung.wiki.xs4all.nl/ - Dutch wiki-page about Madelung, Leri Weill and Dyschondrosteosis with some information and stories of Dutch patients. Nederlands-talige wiki-pagina over Madelung, Leri Weill en Dyschondrosteosis met wat informatie en verhalen van Nederlandse patiënten.
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http://www.disabledaccessories.com - On line shopping for disabled accessories
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http://www.emedicine.com/orthoped/topic513.htm - Article on Madelung Deformity. Artikel over Madelungse Deformiteit in het Engels.
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http://www.ich.ucl.ac.uk/molmed - Web address for molecular medicine unit Prof. Peter Scambler Room 211 Molecular Medicine Unit Institute of Child Health 30 Guilford Street, London WC1N 1EH UK Tel: 020 7905 2635 Fax: 020 79052609 OR 7813 8141 OR 7831 0488 Email: 1] pscamble@hgmp.mrc.ac.uk 2] p.scambler@ich.ucl.ac.uk |
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www.cafamily.org.uk - Link to the Ellis-van creveled foundation. Also contains a name and address of a contact for the foundation.
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www.divdev.fsnet.co.uk/dysch.htm - This is a link to a leri weil/madelung UK self help group. There is no message boards, but it has lots of medical information and other suffer'sstories.
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www.kidswithmadelungs.com - This is a kiddies site that explains what madelung is. It is full on information and rather a great site.
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www.ncbi.nlm.nih.gov - This is a link to rare and genetic disorders
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www.orthopedie.nl - This is a Dutch site where questions can be asked about bone disorders and/or bone problems. Doctors answer questions but also other patients.
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www.shox.uni-hd.de/ - The Human Short Stature Gene Allelic Variant Database Web Site
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