Greetings to all,
I have this genetic condition. I have been told that TRPS is included in the NORD group but I have not been able to find any thread on this. It is also known as Langer-Giedion Syndrome. Perhaps I am not navigating NORD correctly. Any help out there is appreciated.
I was diagnosed at Shriners Hospital-Houston. It is an extremely rare inherited disorder ( about 150 known cases. Symptoms are thin sparse scalp hair, large nose, short hands & feet, & short stature. My grandfather, dad, sister, & 2 children have it. It does not really affect my daily life.
Any feed back from the community is appreciated. I understand there is an abstract on NORD for a fee. Has anyone gotten one of these from NORD?
Peace. Namaste. John vlewallen@msn.com
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