The patient organization provides information, support and advice. It is important that you receive proper care for yourself and / or your child. They advise you to go to an expertise center for care. The quality of care is tested there. On this site you will find all the important information you need. From fellow sufferers contact to expertise centers.

Last modified
13 March 2020
Rare Condition

Oculo-Auriculo-Vertebral Spectrum (Goldenhar Syndrome)

In the total spectrum of OAVS are many syndromes. One of them is Goldenhar Syndrome (GHS). Goldenhar syndrome is a rare congenital defect in the...

Treacher Collins Syndrome

Treacher Collins Syndrome is a genetic disorder characterized by hypoplasia of facial bones (mandible, maxilla and cheek bone), antimongoloid slant of palpebral fissures, coloboma of...

Beckwith Wiedemann Syndrome

The syndrome first described by Beckwith and Wiedemann is characterized by of exomphalos, macroglossia, and gigantism. Beckwith Wiedemann Syndrome (BWS) is now considered as overgrowth...

More info
Dutch Craniofacial syndrome Goldenhar family support group NORD National Organization for Rare Disorders Treacher Collins support organization