Jacobsen's Syndrome (11q-)

Please note: Children, teens, and adults with Jacobsen's Syndrome have facial anomalies that do not require reconstructive surgery.

Chromosome 11q Network (Europe)

• People served: Parents of children with 11q-
• Services provided: Support and information
• Contact person: Annet van Betuw
• Email address: avbetuw@wxs.nl  

11q Research and Resource Group (United States)

• People served: Parents of children with Jacobsen's Syndrome
• Services provided: Support, information, research, online resources, and chatroom
• Contact person: Debra Halperin Biasca
• Email address: biasca@colorado.edu

Joubert Syndrome

Joubert Syndrome Foundation

Please note: Cleft palate can occur with Joubert Syndrome.

• People served: Parents of children with Joubert Syndrome
• Services provided: Networking list, newsletter, and conference
• Address: 6931 South Carlinda Avenue; Columbia, MD 21046
• Phone number: (410) 997-8084
• Fax number: (410) 992-9184
• Contact person: Cheryl Duquette, President & Co-founder
• Email address: joubertduquette@comcast.net
• Website: http://www.joubertsyndrome.org/