on best practices for managing and interacting with individuals with sensory impairment. individuals with norrie disease can often feel isolated from society due to difficulties in communication. in cases where hearing loss is also experienced, this psychological burden has been shown to increase. for example, a number of norrie disease patients have been reported to experience transient depression correlating with the onset of hearing loss. because of this, the provision of emotional support to individuals with norrie disease can be as important as clinical treatment strategies in terms of improving their quality of life and reducing disease burden. research research into understanding norrie disease and how to improve the lives of those with norrie disease is ongoing. for example, research is taking place at great ormond street institute of child health, university college london (ucl gosich) to study the developmental changes in the ear and eye in norrie disease, with the hope to understand how to improve current treatment strategies. the group at ucl gosich is focusing particularly on the hearing loss aspect of the disease, and whether it might be possible to treat by gene therapy. history in 1961, a danish ophthalmologist named mette warburg reported on a danish family that showed seven cases of a hereditary degenerative disease throughout seven generations. the first member of the family to be thoroughly studied was a 12-month-old boy. at the child's examination at three months, it was noticed that he was normal except that his lens appeared to be opaque and his irises were deteriorating. the area behind his lens was filled with a growing yellowish mass. five months later, his left eye was removed due to suspicion of retinoblastoma, a cancerous tumor on the retina. a histologic examination showed a hemorrhagic necrotic mass in the posterior chamber, surrounded by undifferentiated (immature, undeveloped) glial tissue. the diagnosis included a pseudotumor of the retina, hyperplasia of retinal, ciliary, and iris pigment epithelium, hypoplasia and necrosis of the inner layer of the retina, cataract, and phthisis bulbi. the physician had suspected a tumor, although it emerged that it was a developmental defect that led to the malformation of inner parts of the eye. because the eye was not functional, cells had already begun to die (necrosis) and the eye globe began to shrink due to its dysfunction (phthisi bulbi). in this danish family, five of the seven people in these cases developed deafness later in life. also, in four of the seven, mental capacity was determined to be low. after warburg researched literature under various medical categories, she discovered 48 similar cases which she believed were caused by this disease as well. she then suggested this disease be named after another famous danish ophthalmologist, gordon norrie (1855–1941). norrie was greatly recognized for his work with the blind and for being a surgeon at the danish institute for the blind for 35 years. the ndp gene was previously named the “norrie disease (pseudoglioma)” gene, which is still used widely when referring to ndp. however, the current approved name for ndp is “norrin cystine knot growth factor”. culture there are two patient organizations for people affected by norrie disease. the norrie disease association (nda) was founded in 1994 and is a us-based non-profit organization aiming to provide information and support to people living with norrie disease and their families. the nda holds a conference on norrie disease every three years in boston, us. the norrie disease foundation (ndf) is a uk-based charity established in 2016. the main aims of ndf are to provide support for families and promote pioneering research into norrie disease. they organize two family days a year where families with norrie disease can come together to share experiences, meet each other and build relationships and supportive networks. the websites for both patient organizations contain useful information for patients and their families about the disease.