RE-POST Albino/albinism support groups for parents of new babies and children. Our friend at work just had a?

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baby with his girlfriend that is albino/has albinism. I am trying to find as many resources and support groups as possible.
We are in Oregon but online support groups and information also books would be wonderful. And online support groups from anywhere in the world are fine as long as they are english speaking.
Someone has suggested The Oregon School for the Blind.
Thank you Ethel.
Thank you so much Kyleigh!!
I actually just googled it and this came up.

http://community.albinism.org/forums/t/5782.aspx

I hope it helps!

ETA** Your welcome! I hope it's what you were looking for.  (+ info)

What is the hormone (too much or too little of it) that causes albinism?

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Melanin, too little.  (+ info)

What chromosome does albinism affect?

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Please be specific.
  (+ info)

What is the incidence of Albinism?

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Can be a simple answer.
lack of melenin cells. Melanin=pigment .black people tend to have more of it  (+ info)

What is the prognosis for albinism?

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Can be plain and simple.
  (+ info)

what is the limitations does the person with albinism have?

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resources are good too :]
-All individuals with albinism are visually impaired to varying degrees
-People with albinism CAN go out into the sun, they just need to take precautions to avoid damage to the skin caused by the sun such as wearing sunscreen lotions, hats and sun-protective clothing
-People with albinism are very sensitive to glare. Sunglasses and hats are necessities. Young children may occasionally need sunglasses indoors, as typical indoor florescent lighting can be very harsh.

That's about it as far as limitations.

Mashawna  (+ info)

What is albinism and are there any symptoms?

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Lack of pigment. And they burn REALLY easy.  (+ info)

How does albinism occur?

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What happens to make someone/something albino? Is it genetics? Or something in the alleles? Please help.
Albinism is genetic. It is inherited. It is passed on from one generation to the next in the genes. Genes are contained in the egg and the sperm that combine at conception to start the process of forming a baby. Genes act as blueprints that tell the system how to do its work. In the case of albinism, the genes involved are those that tell the eyes or skin how to make melanin pigment.

Each cell in the body has two copies of each gene- one version from the mother and one version from the father. For OCA, the individual with albinism has received an albinism gene from both parents, and both versions of his blueprint for making pigment are incorrect.

If a person carries one normal copy of a gene and one altered or albinism copy of a gene, he or she still has one blueprint that will provide enough information to make pigment. That means that he or she will have normal eye and skin color. For OCA, parents carry an albinism gene with an incorrect version of the blueprint, but they have normal pigmentation, because they still have one normal gene with a normal version of the blueprint.

About 1 in 70 people carries a gene for OCA. Suppose a man and a woman each carry an altered copy of the same gene and have normal coloration. They each have a normal copy and an albinism copy of the gene, and will pass one of these two copies when they conceive a baby. They each have a 1 in 2 chance of passing on the albinism copy of the gene to their baby. As a result, for each pregnancy there is a 1 in 4 chance (1/2 x 1/2) that their baby will get two copies of the gene for albinism, in which case the baby will have no normal blueprint for making pigment, and will have albinism.

If you would like to read more this site is full of information on albinism:
http://albinism.med.umn.edu/facts.htm#causes  (+ info)

Are there fatal forms of albinism?

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I was wondering if there's a rare fatal form of albinism, because Wikipedia has one line (in the albinism article) where it says there is, but it's so rare that it's not widely known.
I looked at Wikipedia, go to this section of the article-
http://en.wikipedia.org/wiki/Albinism#Classification

The last paragraph in that section says that there are some disorders/illnesses that include albinism as a 'symptom' or whatever you call it, I clicked the links to those and it seems like most of those are dangerous or fatal. Perhaps it is referring to those conditions? The standard forms of albinism aren't fatal at all except that they make people more susceptible to things like skin cancer.  (+ info)

Is there a scientific name for albinism? What is it?

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I feel dumb asking this. But I'm doing a research paper, and I want to make sure i'm not missing anything important like the scientific name.
Albinism (from Latin albus, "white"; see extended etymology, also called achromia, achromasia, or achromatosis) is a form of hypopigmentary congenital disorder, characterized by a partial (in hypomelanism, also known as hypomelanosis) or total (amelanism or amelanosis) lack of melanin pigment in the eyes, skin and hair (or more rarely the eyes alone).


It really is a lot faster to simply Google what you want than to wait for someone else to do it.  (+ info)

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