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This website has general information on Rothmund Thomsun syndrome and the features it can cause.
National Foundation for Ectodermal Dysplasias (NFED)
This foundation helps provide educational booklets, support, and resources for children and parents. You can contact them on the website to request for specific brochures, like on skin and dental care.
National Organization for Rare Disorders, Inc (NORD)
This website has a general description of Rothmund-Thomsun syndrome and a list of web-links that may help provide resources. Baylor College of Medicine and Texas Children’s Cancer center Researchers at these two centers are studying Rothmund Thomsun syndrome to better understand its genetics. For more information on the study, contact Dr. Lisa Wang at (832) 824-4822 (email: firstname.lastname@example.org) or Dr. Sharon Plon at (832) 824-3334 (email: email@example.com) or by mail to 6621 Fannin, MC 3-3320, Houston, TX 77030.
NIH/National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse
This website may help you find additional resources or information on skin care and hair loss.