Before You Look for Information on Albinism

Sorting through the wealth of online information on albinism can be a daunting task. What's worth reading, and what's a waste of time? Start with this recommended list of resources to find the information you need to understand and help your child.

On this Parenting Special Needs site

There are lots of articles on this site of interest to parents of children with albinism, but these three will give you a good place to begin.

• What Is Albinism?
• First Five Things to Do After Your Child Is Diagnosed With Albinism
• Preparing the School for Your Child With Albinism

From the About.com guide to Rare Diseases

Mary Kugler, R.N., the About.com guide to Rare Diseases, offers information of interest to parents of children with albinism. Start with these three articles.

• Albinism
• Hermansky-Pudlak syndrome
• Waardenburg syndrome

Just the facts

These reference sites give good overviews of albinism diagnosis and treatment.

• ADAM Healthcare Center
• MayoClinic.com
• Merck Manuals

Organizations

These organizations offer support and resources for families of children with albinism.

• National Organization for Albinism and Hypopigmentation
• Hermansky-Pudlak Syndrome Network
• Albinism Fellowship

Research

Find out more about albinism research, and how your child can participate, on these sites.

• PanAmerican Society for Pigment Cell Research
• The Vision of Children
• ClinicalTrials.gov

Social and cultural issues

Examine the way albinism has been regarded in popular culture, and find some positive reflections on the condition, on these thought-provoking sites.

• Positive Exposure
• Albinism in Popular Culture
• Albinism Through the Eyes of Bianca

Support

Connect with other parents of children with albinism through these support sites.

• Parents of Children With Albinism
• Albinism International
• Albinism Fellowship UK

Blogs

Read these weblogs to follow parents of children with albinism through their daily experiences.

• Parent of a Child With Albinism
• Emerson Porter
• NOAH's Parent's Blog