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.
