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Langer-Giedion syndrome
Is there support?
There is a US based support group, Trichorhinophalangeal Syndrome Association, which offers an e-mail group at http://health.groups.yahoo.com/group/TRPSA (information about the use of online groups is available in our 'Medical Information on the Internet: Seeking Quality' article). This service is moderated. The Association is also in the process of developing and extending the support which they provide to include an annual family meeting, newsletter and website. If you do not have internet access please telephone our free phone helpline on 0808 808 3555.
Group details last updated February 2007.
There is no support group for Langer-Giedion syndrome in the UK. Cross referrals to other entries in The Contact a Family Directory are intended to provide relevant support for these particular features of the disorder. Organisations identified in these entries do not provide support specifically for Langer-Giedion syndrome. Families can use Contact a Family's Freephone Helpline for advice, information and, where possible, links to other families. Contact a Family's web-based linking service Making Contact.org can be accessed at http://www.makingcontact.org.
Inheritance patterns and prenatal diagnosis
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