NOAH AOC

I may have to switch due to insurance carrier change, I want to make sure I take my son to someone with experience in Albinism/Nystagmus. Any recommendations would be great even if I have to drive a bit. I'm sure I will try to see Dr. Hertle at some point in the next year as well. Thanks! -Jessie

Hello everyone, first want to thank you all for taking the time to post all the useful information on this forum. It has really helped me transition to this new Albinism world! My 3 1/2 month old son Colin was just diagnosed Friday with Ocular Albinism, possibly X chromosome type as well as Nystagmus...

hi there,im new to the site,i have a 2 1/2 year old boy with albinism and have problems finding dark glasses can anybody help me please

My son is 3 months old and has only made eye contact ONCE. I brought him to an ophthalmologist yesterday because his eyes are constantly 'roving' as well as having a jerky nystagmus. That is when he was diagnosed with albinism. The doctor couldn't comment on his vision yet (other than that...

Hey everyone! I'm a sophomore in high school and I'm taking health this year. We have a term paper and oral presentation to do, and I am doing mine on albinism. Now, I know there's plently of great information on here about albinism, but I find it a little more interesting hearing from people...

I post a lot of videos of Lyra. I do this not just to entertain, but also to support my overall purpose of starting this site. I’m not sure if they really HELP other parents of children with albinism.?? I hope that for NEW parents of a child with albinism, watching these videos gives [...]

Over the last couple of weeks I’ve been borrowing a friend’s Sony Digital SLR camera. It’s AMAZING how easy it is to take good pictures when you have a good camera. It’s been so much fun! I’ve been taking pictures like crazy. Lyra really knows how to ham it up for the camera...

Lyra had an appointment with her pediatric ophthalmologist this month, a check-up that was originally scheduled for the end of September. Several weeks ago, we lost one of the lenses from Lyra’s glasses. After over a week of searching, I gave up. We knew we had to get her a new pair. I didn’t...

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...

Hey, everbody! I have an appointment for Jathan with his new PO on August 9th. Does anybody have any suggestions on what questions I shoud ask or what I should look for? The first PO that I went to was horrible and left me crying for weeks. He was so negative and didn't answer any of the questions...