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.
Vision Related
American Nystagmus Network– A nonprofit organization to serve the needs and interests of individuals with nystagmus and and/or their families.
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.
Websites/Blogs of parents of children with albinism
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.
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.
English