Resources

Posted By 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

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.

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