Useful links

Help helpen: World Community Grid





We as organisation do not only help people with CMTC but we also offer anybody the possibility to help others. This help consists of offering not used computer time of personal computers.
By installation of a free piece of software on your computer you can help in the battle against AIDS. When your computer is idle this program uses the computing power of your computer to calculate on mathematical models with the final goal to fight AIDS.

Our organisation is partner of this initiative.

>> The complete story about the World Community Grid initiatief

>> More information about & free installation of the program


Links

Below are links to other websites who are relative to our union.
Would you like to have a link to your website please contact the chairman.
Access for:
Dutch/Nederlands
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Birth defects research for children www.birthdefects.org
Canadian Organization for Rare Disorders (CORD) www.raredisorders.ca
CMTC & Macrocephaly www.macrocephaly-cmtc.com
Ectodermale Dysplasie www.ectodermaledysplasienederland.tk
Dermatologische atlas www.dermatlas.com
Digitaal Ziekenhuis Nederland www.ziekenhuis.nl
European Organisation for Rare Disorders www.eurordis.org
Genetic Alliance (USA) www.geneticalliance.org
Glaucoom Vereniging www.glaucoomvereniging.nl
Huidfederatie www.huidfederatie.nl
International Society for the Study of Vascular Anomalies (I.S.S.V.A.) www.issva.org
Kind en Ziekenhuis www.kindenziekenhuis.nl
National Organization for Rare Disorders (NORD) www.rarediseases.org
National parents to parents network (USA) www.netnet.net/mums
Nederlandse Patiënten/Consumenten Federatie (NP/CF) www.spin.nl
Nederlandse Sturge-Weber Vereniging www.nswv.nl
Proteus Syndrome (UK) www.proteus-syndrome.org.uk
Proteus Syndrome (NL) www.proteus-syndrome.nl
Sneddon Syndroom (NL)  www.sneddon.nl
Stichting Klippel-Trenaunay Nederland www.sktn.eu
Vascular Birthmarks Foundation USA www.birthmark.org
Vascular Birthmarks Foundation Europa www.vbfeurope.org
Vereniging Samenwerkende Ouders en Patiëntenorganisaties (VSOP) www.vsop.nl

Links to patients websites
Ellayna Gallis gallisministries.truepath.com/ellayna.html
Van Downey www.vanalexzander.webs.com
Psychological aspects
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