Links Page
Mowat-Wilson Syndrome (mowatwilson.org)
Medical Info Links and Information Other Resources Personal Web Sites Support Groups Early Intervention Programs by State Genetic Testing & Searches by State and Country Medicaid by State Search Medical Devices Drug Information Apps & Games Documentary Film
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Mowat-Wilson Syndrome Parents Group in a larger map
Medical Info Links and Information
Coordination of Rare Diseases Registry at Sanford- CoRDS
A national disease registry being developed to include multiple and ultimately
all rare genetic diseases.
If you would like to participate use the
following link.
Sanford Children's Health
Research Center
Mowat-Wilson Syndrome vs Angleman Syndrome - A
comparison of the similar characteristics between MWS and AS. Produced at
Levine Children's Hospital at
Carolinas
Medical Center
by
Campbell K. Brasington, MS, CGC
Orphanet Journal of Rare Diseases -
(Latest article I have found with the most recent findings, very
)
www.ojrd.com
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
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
ORPHANANET - (Hirschsprungs-mental
retardation syndrome)
www.orphanet.net
Karger Publishers - Hormone Research - (Hypospadias
and Mowat-Wilson Syndrome)
www.karger.com
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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
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Mowat-Wilson-Deutschland - (A website for a
family in Germany and their son Niklas)
www.mowat-wilson-deutschland.de
www.aimes-story.co - (A website set up for
Aime living in Redruth, Cornwall, U.K.)
http://www.aimes-story.co.uk:80/
Mikella's Page - (A website set up for Mikella
living in South Africa)
mikellamws
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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)
Italian Association for Mowat-Wilson Syndrome
www.mowatwilson.it return
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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
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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
The University of Chicago
Genetic Services
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
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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
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Drug Watch (Drug Descriptions, Interactions and Side Effects -
A Valuable Resource)
Drug Information
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The Key of G (a documentary film about a family whose son has
Mowat-Wilson Syndrome - click here to see
screener)
Lateral Films
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Knee Bouncers (online games for toddlers, some work
with a touch screen monitor)
www.kneebouncers.com
Tap to Talk (assisted speech device, works online with
apps for Android and Apple devices)
www.taptotalk.com
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Mowat-Wilson Syndrome