Links Page
Mowat-Wilson Syndrome (mowatwilson.org)
Bookmarks - Medical Info Links and Information - Other Resources - Personal Web Sites - Inspirational Links - Support Groups - Early Intervention Programs by State - Genetic Testing & Searches by State and Country - Medicaid by State Search - Medical Devices - Documentary Film
Medical Info Links and Information
Liz Evans - (research student at the University of New South Wales Au. will be conducting a behavioral and emotional study of people with Mowat Wilson Syndrome through March of 2007, contact her if you care to be involved (click for more information) or email her at <heresliz@optusnet.com.au>
Genetics Home Reference -(excellent
article in layman's terms covering all aspects of Mowat-Wilson Syndrome)
Mowat-Wilson
Syndrome on Genetics Home Reference
Gene Review - Mowat-Wilson Syndrome - (very
thorough article covering symptoms, diagnosis and related genetic information)
GeneClinics.org
American Journal of Medical Genetic - (this
links to an article about a child with MWS that is high functioning compared to
other children with MWS.) Unfortunately you need to pay to view the whole
article.
Wiley InterScience
Center for Genetics Education - (PDF. file
good article for the layman 12/05 update)
www.genetics.com.au
Journal of Medical Genetics - (extensive
articles)
http://jmg.bmjjournals.com/cgi/content/full/40/5/305 and
http://jmg.bmjjournals.com/cgi/content/full/41/2/e16
Institut fur Humangenetik Universitat Erlangen -
(good summary article)
http://www.humgenet.uni-erlangen.de/2k/AGRauch_Summary.html
National Library of Medicine-
(a 70 patient study of MWS by facial features)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=16053902&dopt=Citation
National Library of Medicine - (address' ACC
and other conditions associated with MWS)
www.ncbi.nlm.nih.gov
ORPHANANET - (Hirschsprungs-mental
retardation syndrome)
www.orphanet.net
Karger Publishers - Hormone Research - (Hypospadias
and Mowat-Wilson Syndrome)
www.karger.com
return to top
Lee's Sensory Profile Report - (a sensory
profile done at age 27 years of an individual born in 1979)
PDF File - Click to open in new window 
Family Village Disability Related Resources -
(links to helpful regional resources by state)
www.familyvillage.wisc.edu/Comm/Index.html
Contact a Family - (a website for
families with disabled children with a good MWS article)
www.cafamily.org.uk
Making Contact - (Contact a Families member
area where you can post and read about other families)
www.makingcontact.org/index.php?ci=1062
Genetic Alliance
www.geneticalliance.org
NORD - National Organization for Rare Disorders
www.rarediseases.org
Unique / Rare Chromosome Disorder Support Group
(good site with very useful information)
www.rarechromo.org
The Little Yellow Book (a publication on the
Unique website about rare chromosome disorders written in layman's terms)
www.rarechromo.org/html/LittleYellowBook.asp
return to top
mowatwilson.de - (A website for a family in
Germany and their son Nick)
http://www.mowatwilson.de
return to top
www.aimes-story.co - (A website set up for
Aime living in Redruth, Cornwall, U.K.)
http://www.aimes-story.co.uk:80/
Welcome to Holland - (we found this to be
inspirational and enlightening)
Welcome to
Holland return
to top
MW Parents - (Mowat-Wilson Parents
Support Group. An
international group of 34 families, and growing, all of whom have a family
member with MWS.) This group is by invitation only, to join send an email to,
Dave Curry
Dutch MWS Support Group - (a support group for
Dutch speaking people run by a family in the Netherlands)
For contact
information email us.
UK MWS Support Group (a support group and
website for families in the United Kingdom)
MWS Support UK
(website)
MWS Support UK email
(email link)
return
to top
Early Intervention Programs by State
National Early Childhood Technical Assistance
Center (great place to locate information regarding special
education programs, publications etc.)
NECTAC: State Part C
Coordinators
return to top
Genetic Testing & Search Sites
Children's Mercy Medical Center, Kansas City, MO. U.S.A.
Testing for Mowat-Wilson Syndrome
Emory University School of Medicine, Decatur, Georgia, U.S.A.
(404-778-8500 or email
Vanessa Rangel
Miller)
Testing for Mowat-Wilson Syndrome
GENDIA - Genetic Diagnostics
(check under Molecular Tests by Disease, Mowat-Wilson or
by Gene, ZFHX1B)
www.gendia.net
Universidade de Santiago de Compostela
(University of Santiago de Compostela)
www.usc.es (Spanish)
www.usc.es/en
(English)
European Directory of DNA Diagnostic Laboratories
www.eddnal.com
Gene Testing Search Site (US Clinic Directory
Search Page. You can search by state. I found the best results picking,
services* - pediatric genetics and then,
Specialty Clinics _
chromosome deletion* or mental retardation* I would look for University
Hospitals or Research Hospitals)
Search by Clinic
Search by Condition
return to top
Centers for Medicare and Medicaid Services (you can search for
information about Medicaid waivers, such as Katey Beckett programs, by state to see what services are available in your
state)
Centers for Medicare and
Medicaid Services
HCBS Clearinghouse for the Community Living Exchange Collaboration
(Click on the State Link to view state by State waiver
information)
HCBS.org
Nasal Drug Delivery Device's (not F.D.A. approved in U.S.A.
but available outside the U.S.)
www.wolfetory.com
return to top
The Key of G (a documentary film about a family whose son has
Mowat-Wilson Syndrome - click here to see
screener)
Lateral Films
Return to Forum
Mowat-Wilson Syndrome