National Organization for Albinism
and Hypopigmentation (NOAH) NOAH’s mission is to act as a conduit for accurate and authoritative information about all aspects of living with albinism and to provide a place where people with albinism and their families, in the United States and Canada, can find acceptance, support and fellowship.
MD Support is an Internet resource, containing over 1,000 links, transcripts of group
sessions with professionals in the field, a research library, a book store,
and much more.
Macular Degeneration Foundation is dedicated to educating people about macular degeneration: the various
forms of the disease; the status of research into genetic and other causes;
new developments in treatment and adaptive technology; and advice on how
to cope with reduced or lost central vision
The Foundation's newsletter, The
Magnifier, is printed in extra large type and is free.
a nationwide support group for individuals and their families endeavoring
to adjust to the restrictions and changes brought about by macular disease.
disease (also known as fundus flavimaculatus and Stargardt's macular
dystrophy) is the most common form of inherited juvenile macular degeneration.
Inherited as an autosomal recessive trait, it is a severe form of MD
that begins in late childhood, leading to legal blindness. Stargardt's
disease is symptomatically similar to age-related macular degeneration,
and it affects approximately one in 10,000 children.
What is Usher syndrome? Usher syndrome is the most common condition that involves both hearing and vision problems. A syndrome is a disease or disorder that has more than one feature or symptom. The major symptoms of Usher syndrome are hearing impairment and retinitis pigmentosa, an eye disorder that causes a person's vision to worsen over time. Some people with Usher syndrome also have balance problems. There are three general types of Usher syndrome. Although the syndrome was first described by Albrecht Von Graefe in 1858, it was named for Charles Usher, a British eye doctor, who believed that the condition was inherited or passed from parents to their children.