Stickler Syndrome
The mission of Stickler Involved People is to educate and give support to people affected by Stickler Syndrome. They have a shared network and are in the process of starting a pen pal group for all ages.
Resources
IEP Resources for Children with Albinism
NOAH provides parents and educators of school aged children with albinism with resource information that will aid them in formulating their child’s IEP.
Joubert Syndrome Foundation
The Joubert Syndrome & Related Disorders Foundation is an international network of parents who share knowledge, experience, and emotional support. The foundation offers a networking list, newsletter, and a biennial conference.
Future Reflections: magazine for parents and teachers of blind children
Future Reflections is a magazine for parents and teachers of blind children. It is published quarterly by the American Action Fund for Blind Children and Adults in partnership with the National Organization of Parents of Blind Children.
Junior Blind of America
Junior Blind’s mission is helping children and adults who are blind, visually impaired or multi-disabled achieve independence.
Lighthouse Guild
Lighthouse International is dedicated to fighting vision loss through prevention, treatment and empowerment.
ReadBooks! Braille Literacy Program
ReadBooks! is a national children’s braille literacy program encouraging families with blind children to read print/braille books together.
Learning Ally (Recording for the Blind)
Formerly known as Recording for the Blind and Dyslexic, Learning Ally produces audio-format textbooks for students of all ages.
OMIM: Searchable Database of Genetic Disorders
Online Mendelian Inheritance in Man (OMIM) is a comprehensive, authoritative, and timely compendium of human genes and genetic phenotypes.
National Organization for Rare Diseases (NORD)
NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Hungry Fingers Tactile Toys & Graphics
Hungry Fingers educational tools are designed to give visually impaired children the confidence that with poor vision, or even without sight, they can be in command of the space around them.
Bookshare: An Accessible Online Library
Bookshare is an online library of digital books for people with print disabilities. Members with visual impairments can listen to books by using a text-to-speech synthesized voice, read books in Braille, or access the material in large print.
Paths to Literacy for Students who are Blind or Visually Impaired
A literacy site from Perkins and TSBVI designed to assist educators and families in their quest to provide literacy experiences for their children who are blind or visually impaired.
Prevent Blindness America
Founded in 1908, Prevent Blindness America is the nation’s leading volunteer eye health and safety organization dedicated to fighting blindness and saving sight.
Blind Children’s Center
The Blind Childrens Center serves children from birth to school-age who are blind or severely visually impaired. The Center’s goal is to provide a comprehensive program of specialized education and training.