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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.
Blepharophimosis, Ptosis, Epicanthus Inversus Family Network
a/k/a: BPEIFN
Address
SE 820 Meadow Vale Dr.
Pullman, WA 99163
Phone
509-332-6628
Fax
--
800 Number
--
TDD
--
Email Address
Lschauble@gocougs.wsu.edu
Website
The Blepharophimosis, Ptosis, Epicanthus Inversus Family Network (BPEIFN) 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 healthcare 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 and members of the medical community, research professionals and other interested individuals.
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