Links:

Lowe USA : The Lowe Syndrome Association (LSA)

Lowe France: Association du syndrome de Lowe (ASL)

Lowe Italy: l'Associazione Italiana della Sindrome di Lowe (AISLO)

List of Lowe testing laboratories: http://www.lowesyndrome.org/ls/lsTestingLabs.html

Biochimie de l'ADN, Grenoble France Request and Consent Form .pdf doc  

Baylor College of Medicine USA : DNA and Biochemical tests and forms

ABA Applied Behaviour Analysis  http://www.behavior.org/

Assoc of Medical Research Charities AMRC  http://www.amrc.org.uk

CLIMB UK Children Living with Inherited Metabolic Disease www.climb.org.uk  

The Challenging Behaviour Foundation (UK) http://www.thecbf.org.uk 

- Medication leaflet (2005) http://www.thecbf.org.uk/13Medication.PDF

- Family link scheme application form http://www.thecbf.org.uk/APP.PDF

- Order form for DVD/Video on "challenging behaviour": http://www.thecbf.org.uk/video%20order%20form%20revised.pdf

Family Fund grant-giving organisation for UK families caring for disabled children http://www.familyfund.org.uk/

Foundation for people with learning difficulties UK: http://www.learningdisabilities.org.uk/

GPnotebook UK  http://www.gpnotebook.co.uk/simplepage.cfm?ID=-355467220

Jeans for Genes  http://www.jeansforgenes.com/1_home/index.php

UK Contact a Family : www.cafamily.org.uk  Tel 0808 808 3555

UK Special Educational Needs and Statementing :   http://www.direct.gov.uk/EducationAndLearning/Schools/SpecialEducationalNeeds/fs/en

New 2006 UK Government website for children's services http://www.everychildmatters.gov.uk/socialcare/disabledchildren/support/

UK Government Genetics White Paper June 2003 "Our Inheritance, our future -realising the potential of genetics in the NHS"  www.doh.gov.uk/genetics/whitepaper.htm

IPSEA Independent Panel for Special Education Advice http://www.ipsea.org.uk/  

MIND learning difficulties : http://www.mind.org.uk/Information/Booklets/Understanding/Understanding+learning+disabilities.htm

National Autistic Society http://www.nas.org.uk/

Kidney School - learn about kidneys and test results :  http://www.kidneyschool.org/index.html

General Medical Sites:
Lowe Syndrome : http://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome401.html

Index of UK healthcare resources:  www.healthcentre.org.uk

Search for medicines: http://www.proactivehealth.com

Cataracts: www.moorfields.org.uk/EyeHealth/Cataracts/view    http://www.ssc.mhie.ac.uk/eyeconds/Lowe%27s.htm 

Glaucoma

Poor muscle tone: http://freespace.virgin.net/bch.hypotonia/

Fanconi: http://www.nlm.nih.gov/medlineplus/ency/article/000333.htm

Acidosis http://www.nlm.nih.gov/medlineplus/ency/article/000497.htm

Alfacalcidol medicine:  http://www.dundee.ac.uk/medicine/tayendoweb/images/alfacalcidol.htm

Ricketts: http://www.nlm.nih.gov/medlineplus/ency/article/000344.htm

Poor growth http://www.nlm.nih.gov/medlineplus/ency/article/000991.htm

How to read a blood test http://www.nlm.nih.gov/medlineplus/ency/article/003642.htm

Epilepsy (siezures) http://www.epilepsy.org.uk/

EPA-rich Fish and Primrose Oil (Eye-Q)  www.equazen.com

German Institute Medical Documentation DIMDI : http://www.dimdi.de/static/en/db/export_quicksearch.htm

Alternative and Unconventional medicine

Acupuncture: http://www.medical-acupuncture.co.uk/

Alternative medicine: http://www.brap.co.uk/   

Cranial Osteopathy: http://www.osteopathy.org.uk/ois/factsheets/e.shtml

bio-electrical medicine:  http://www.quantum-life.com/cgi-bin/main.pl?content=home

Neurolink - http://www.neurolinkglobal.com/

Other sites of interest

Battens Disease (also a missing enzyme)  http://bdsra.org/

Gene therapy  http://www.advisorybodies.doh.gov.uk/genetics/gtac/index.htm    http://www.ich.ucl.ac.uk/pressoffice/pressrelease_00311

Gaucher (also an enzyme disease)  http://www.gaucher.org.uk/

Stem Cell therapy :  http://www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/StemCell/fs/en   http://www.isscr.org/   www.stemcellsinc.com/