Resources
Posted By admin on May 11, 2007
Albinism Information
- NOAH (The National Organization for Albinism and Hypopigmentation)- An organization where people with albinism, their families and those that work with them can get information, ask questions and share their experiences.
- Albinism International- An online support community for people with albinism, parents of children with albinism, and people related persons with albinism.
- Albinism Fellowship UK- An organization that aims to provide information, advice, and support for people with albinism and their families.
- SARA Foundation (Supporting Albinism Research and Awareness)- A site created to help parents who have children who are diagnosed with albinism.
- Positive Exposure- Positive Exposure is a not-for-profit, 501(c)(3) organization whose innovative programs challenge the stigma associated with difference and celebrate the richness of genetic variation with positive images and powerful life stories.
- The Hermansky-Pudlak Syndrome Network Inc.- The Hermansky-Pudlak Syndrome Network Inc. is a volunteer self help, not for profit support group for persons and families dealing with Hermansky-Pudlak Syndrome (HPS) and related disorder such as Chediak Higashi Syndrome.
- Albinism Fellowship of Australia
Vision Related
- American Nystagmus Network- A nonprofit organization to serve the needs and interests of individuals with nystagmus and and/or their families.
- Vision for Tomorrow Foundation
- Hadley School for the Blind- Offers free courses to parents and grandparents of children who are blind or visually impaired on a variety of vision related subjects.
- The Low Vision Gateway- A comprehensive list of low vision resources from around the world.
- Vision of Children- Information about current medical research, outreach, and education.
- NAPVI (National Association for Parents of the Visually Impaired)- NAPVI is a national organization that enables parents to find information and resources for their children who are blind or visually impaired, including those with additional disabilities.
- NOPBC (National Organization of Parents of Blind Children) – a national membership organization of parents and friends of blind children reaching out to each other to give vital support, encouragement, and information. NOPBC is a division of the National Federation of the Blind.
Websites/Blogs of parents of children with albinism
- Alana’s Albinism Site
- Amber’s page
- The Biner Boys
- William’s Site
- Joseph Andrew
- Skate Angel
- Life in Noodletown
- Ramblings of Casey
- Inconsistent Ramblings
- Blancas Family
Websites/Blogs of adults with albinism
Social Networking
Commercial Websites
- Solar Eclipse- Sun protective clothing
- UV Sungear- Large selection of sun protective swimwear, clothing, sunglasses and hats for the whole family. Also have sunshades for car seats and strollers.
- Baby Ride- Not the most organized site, but they have a lot of really unique products in the accessories section, including a great sunshade by Jolly Jumper for full size car seat.
- Sun Togs- Sun protective clothing for all ages and cool kids sunglasses.
- North Solar Screen- Various types of window tinting and window shades.
- Llumar Window Film and Window Tint- Professional glass film/tinting for home or auto.
- Industrial Shadeports- Custom build shade structures.
- Protect-a-Bub- Sun protective clothing and accessories.
- One Step Ahead- They have a variety of products for babies and children, including many for sun protection. Shop through iGive.
Other Resources
- SENSwitcher- Free computer application/game to promote vision development. You can run the program online or you can download it onto your computer.
- Seedlings- A non-profit organization providing a wonderful selection of high quality, low cost braille books for children. They have many popular titles and the books include both print text and the braille.
- Library Reproduction Service- Large print books for children and adults and Large Print reproductions of educational materials for special needs students.
- Perky Duck – A six-key braille emulator computer program for creating braille files. Uses a regular computer keyboard. Good for parents to practice on when learning braille.
Articles
- Socialization and the Child with Low Vision
- The Role and Function of the Teacher of Students with Visual Impairments
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