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Welcome to VCFS DiGeorge Family Support! John was diagnosed with VCFS a few days after he was born. He was very fortunate not to have any of the heart issues that seem so prevalent ...(more)

An international community forum dedicated to sharing support and information regarding Beckwith-Wiedemann Syndrome (BWS). Members include individuals with BWS, as well as their ...(more)

Joubert syndrome is a rare, genetic disorder that affects the area of the brain that controls balance and coordination. The disorder is characterized by agenesis (absence) or hypoplasia ...(more)

This Russell-Silver Syndrome list is a support/discussion list for anyone who has a child or family member with RSS or for adults with RSS. Discussions will include sharing our ...(more)

This support group is for people who are suffering from long QT or know of someone who is. Topics include, but are not limited to, genetic testing, testing for long QT, symptoms, ...(more)

Chromosome Disorder Outreach, Inc. (CDO)is a non-profit organization providing emotional support & detailed information to families caring for a loved one diagnosed with a rare ...(more)

An international democratic group promoting the exchange of Beckwith-Wiedemann Syndrome (BWS) related information and support, as well as facilitating a lively discussion between group ...(more)

Keywords:Smith-Magenis Syndrome , sms, disorders. The SMS Mailing list is designed to promote the exchange of information and communication about Smith-Magenis syndrome among parents...

This is a semi-moderated group for people with EDS (Ehlers Danlos syndrome) and folks interested in learning more about it. Topics permissible include living with EDS, finding medical ...(more)