Blepharophimosis

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "Blepharophimosis"

Who to Contact

BPES Family Network
SE 820 Meadow Vale
Pullman, WA 99163
(509) 332-6628
Email: lschauble@gocougs.wsu.edu
Website:http://freespace.virgin.net/andy.bowles/ This is a voluntary self-help organization dedicated to gathering and disseminating information regarding Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome (BPES). BPES is a rare genetic disorder characterized by abnormal narrowness of the eyelids in a horizontal direction (blepharophimosis), drooping of the upper eyelids (ptosis), vertical eyelid folds on either side of the nose (epicanthus inversus), and/or other abnormalities. The group provides a support network to affected individuals and their families and works with medical specialists and health care professionals to help provide the best possible care for affected individuals. Established in 1994, the organization also distributes a variety of educational and support materials through its computer database, regular newsletter, reprinted journal articles, and pamphlets. The Network also conducts an annual conference for affected individuals, families, members of the medical community, research professionals, and other interested individuals.

Where to Go to Chat with Others

• Blepharophimosis
  Support community for people affected by "Blepharophimosis." This group is open to anyone interested in making friends, sharing information and support with others affected by this disorder.

Learn More About It

• Blepharophimosis, Epicanthus, and Ptosis; BPES
  From Online Mendelian Inheritance of Man (OMIM)

• Blepharophimosis with Ptosis, Syndactyly, and Short Stature
  From Online Mendelian Inheritance of Man (OMIM)

• Ptosis Associated with Blepharophimosis
  From Michael Bermant, MD

Web Sites

• Blepharophimosis, Ptosis, Epicanthus Inversus Family Network
  

• FACES: National Craniofacial Association