Albinism

There’s only one sort of natural blonde on earth – albinos - Marilyn Monroe

Albinism
Albinism

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Our First Year

My daughter Lyra was born on May 11th 2006. She had white, almost clear hair at birth. Even though our older two kids were born with dark hair, we weren’t terribly shocked since I had a brother and a niece who were both born with white hair. Albinism was suspected immediately by the doctors, but it wasn’t until 2 days after birth when she was examined by the Pediatric Ophthalmologist, that the diagnosis was confirmed. Lyra had Oculocutaneous Albinism...

After a week or two of denial along with a serious case of postpartum depression, I finally accepted it… I had a sweet, beautiful, platinum blonde baby girl who couldn’t have been more perfect.

I immediately began researching.…

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Resources

 Our First Year

I discovered very quickly that most people were clueless as to the facts about albinism. They think of the stereotype “Albino” that they see on TV.

Positive Exposure

Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people. So Rick turned his world upside down – he stopped working in the fashion industry and created a not-for-profit organization that he named Positive Exposure.

Albinism in Africa

We are a group of researchers, people with albinism, NGOs, artists and writers who share an interest in albinism in Africa. This website aims to provide accurate and accessible information on albinism in Africa, plus information on advocacy, education, projects and research.

Parent of a Child with Albinism

I discovered very quickly that most people were clueless as to the facts about albinism. They think of the stereotype “Albino” that they see on TV.

Salif Keita Global Foundation

The Salif Keita Global Foundation is a non-profit organization founded by Malian musician and singer, Salif Keita. The US-based non-profit tax-exempt 501(c) 3 organization brings media attention to the global plight of people with albinism, has advocacy for their rights and social integration, and raises funds to provide them with free healthcare and educational services in the US, Africa and around the world.

The Albino Foundation

We are an advocacy organisation that empowers persons with albinism and educates the society about albinism in Nigeria and the world.

The Will to See

The boys were both diagnosed with Ocular Albinism, a condition that impacts their visual acuity. Will’s vision is much more affected than Jack’s.

World Albinism Alliance

Bringing together albinism associations from around the world.

National Organization for Albinism and Hypopigmentation

NOAH’s mission is to act as a conduit for accurate and authoritative information about all aspects of living with albinism and to provide a place where people with albinism and their families, in the United States and Canada, can find acceptance, support and fellowship.

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