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Mowat-Wilson Syndrome (mowatwilson.org)

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Medical Info Links and Information

Mowat-Wilson Syndrome Foundation
The mission of The Mowat-Wilson Foundation is to enhance the lives of people affected by Mowat-Wilson Syndrome by providing family support, raising awareness, and supporting research and education.
www.mowat-wilson.org

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.        FAQ Sheet PDF
    Power of Hope PDF
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     Click for PDF File

Orphanet Journal of Rare Diseases - (Latest article I have found with the most recent findings, very thorough)
www.ojrd.com

Group Heatlh, National Organization for Rare Disorders. (extensive article about MWS)
ghc.org

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)  Click for PDF File
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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Other Resources

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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Personal Websites

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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Support Groups

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)
Dutch Facebook page

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   

Groupe Syndrome Mowat-Wilson Francophone - (French speaking group and forum)
French Group

French Forum

Mowatwilsonsupport - (unknown origin)
mowatwilsonsupport.org

 

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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.
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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Medicaid by State Search

HCBS Clearinghouse for the Community Living Exchange Collaboration (Click on the State Link to view state by State waiver information)
HCBS.org

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Medical Devices

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 Information

Drug Watch (Drug Descriptions, Interactions and Side Effects - A Valuable Resource)
Drug Information    
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Documentary Film

Going Solo - (A must see video with insight from Dr's Mowat and Wilson and the story of Max)
Going Solo

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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Games & Apps

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