MPSVI Home
Metin Büyüklüğü düzenli büyük çok büyük
Sağlık Bakımı Uzmanları Hastalar ve Bakıcılar Bizimle İrtibat Kurun
MPS VI Hakkında Bulgular ve Yakınmalar Tanı Tedavi Fotoğraflar Kaynaklar

Welcome to www.MPSVI.com

Have You Seen Maroteaux-Lamy?

Patients

Maroteaux-Lamy (MPS VI)—A Progressive,
Devastating, and Under-Diagnosed Disease

This site is dedicated to improving awareness and early and accurate diagnosis of Maroteaux-Lamy syndrome, or mucopolysaccharidosis type VI (MPS VI), and to providing access to resources that will help advance optimal management of this disease across all relevant disciplines.

MPS VI is a rare and complex disease that exacts a staggering toll on those affected by it. The progressive and heterogeneous nature of MPS VI calls for increased awareness and aggressive, early diagnosis as breakthrough research moves us toward innovative treatment strategies.1

  1. Wilcox WR. Lysosomal storage disorders: the need for better pediatric recognition and comprehensive care. J Pediatr. 2004;144(5 Suppl):S3-S14. Review.
  2. Swiedler SJ, Beck M, Bajbouj M, et al. Threshold effect of urinary glycosaminoglycans and the walk test as indicators of disease progression in a survey of subjects with mucopolysaccharidosis VI (Maroteaux-Lamy syndrome). Am J Med Genet. In press.
BIOMARIN Gizlilik politikası || Site haritası