22q11 Deletion Syndrome

(Velocardiofacial and DiGeorge Syndromes)

22q11 Deletion Syndrome occurs in approximately 1-4000 births. It happens when a small band of chromosome 22 at the q11.2 area are missing. 

22q11 Deletion has been described by many different names, The 22q11.2 Deletion Sydrome, Velocardiofacial syndrome, DiGeorge Syndrome, Conotruncal Anomaly Face syndrome, Opitz G/BBB Syndrome, Cayler Cardiofacial Syndrome and this is because of the history of how it was initially described by different people. To understand more about the history and name issues, read the History of 22q11- from the CHOP website.

22q11 Deletion can result in a variety of effects on a person - about 180 different findings have been listed, but some common features can incude heart defects, immune system problems, a distinctive facial appearance, learning challenges, cleft palate, hearing loss, kidney problems, hypocalcemia, and sometimes psychiatric issues.

 Please visit:

Additional Support, Information and Awareness:

Canada and USA

• The International 22q11.2 Deletion Syndrome Foundation

• The 22q Family Foundation

• 22q Canada (Facebook group)

• 22q families British Columbia

• 22Q Texas, Inc.

• Mission 22q (Nebraska)

• Angels with missing pieces (Kansas City area)

• 22qties Unite

• Friends of Quinn
  

• 22q11.2 Society (International Group for professionals)

• There are 22q groups for most US states if you search Facebook

International

• 22q Europe

• 22q11 Ireland

• 22q Northern Ireland

•  22q11 Foundation - Australia and New Zealand

• 22q Crew (UK)

• MaxAppeal - UK

• Kids 22q11 Germany

• AIdel22 - Italy

• Association 22q Spain

• 22q Andalucia Spain

• Generation 22 - France

• 22q Belgium

• 22q Poland

• 22q Denmark

• 22q Columbia

• Stichting Support 22Q11 - The Netherlands

• 22q Argentina (Facebook)

• 22q Portugal (Facebook)

• 22q Africa (Facebook)

• 22q Heart Club - Japan

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SPECIALTY CLINICS

Canada

• Dalglish Family Hearts & Minds Clinic for 22q11.2 Deletion Syndrome in Toronto, Ontario (Adult Focus)

• 22q Deletion Syndrome Clinic - Hospital for Sick Children - Toronto, Ontario

United States

• The 22q and You Centre - Children's Hospital of Philadelphia

• 22q11 Deletion Clinic MassGeneral - Boston, Massachusetts

• 22q Clinic at Phoenix Children's Hospital

• Southeastern Regional Center of Excellence for 22q -Atlanta, Georgia

• 22q Clinic - Children's Hospital of Chicago

• 22q Center - Cincinnati Children's Hospital

• 22q Center at Nationwide Children's Hospital - Columbus, Ohio

• 22q Deletion Syndrome Specialty Clinic, Childrens Hospital Colorado

• 22q11 Deletion Clinic at Duke Children's Hospital -Durham, NC

• 22q Clinic - Children's Mercy Chospital - Kansas City, Kansas

• 22q Developmental Clinic - Geisinger - Lewisberg, Pennsylvania

• 22q  Program, Children's Hospital of Wisconsin

• 22q Clinic, Child Development and Resource Centre, Oregon Health and Science University, Portland, Oregon

• 22q Clinic Seattle Children's Hospital, Washington

• UCLA 22q11 Clinic Los Angeles - UCLA Mattel Children's Hospital

• 22q Clinic at Nicklaus Children's Hospital, Miami Florida

International

See the International 22q11.2 Foundation website for International Clinics