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Avm the story of my survival

i am a 40 year old woman married with 2 beautiful young sons. I was diagnosed when I was 35, I have always since childhood… Continue reading Avm the story of my survival

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Becoming blind and getting back some vision

My name is Dorothea and I live in Germany. I’m 45 years old and since the third year of my life I have been visually… Continue reading Becoming blind and getting back some vision

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Aoibhe O’Connor ML 2.5

http://youtu.be/0tXApFUCq_Q A snapshot of Aoibhe’s life since the last Rare Disease Day in 2014. On the 28th of February 2015, it is Rare Disease Day… Continue reading Aoibhe O’Connor ML 2.5

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Sit Down Interview with Jen Ambrose about Visual Snow

Interviewed By: Melody Lay COVT For the benefit of our readers, can you describe how you are involved with Developmental Optometry? A few years after… Continue reading Sit Down Interview with Jen Ambrose about Visual Snow

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Living with Visual Snow and other debilitating visual conditions

Hi. My name is Jennifer Ambrose. I am the founder of the Eye on Vision Foundation (EOVF). I’d like to just take a few moments… Continue reading Living with Visual Snow and other debilitating visual conditions

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Raising awareness of Caden’s mystery 18p11.32

Hi I am Casey, Cadens very proud mum. This story and journey out there in hopes for a diagnosis or cure. Caden was born July… Continue reading Raising awareness of Caden’s mystery 18p11.32

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Knowah’s Long Road to Wiskott-Aldrich Syndrome (WAS)

My name is Dindin, a housewife from Batangas City, Philippines. I am the mother of Knowah, a 10-month old angel, a sweet blessing given to… Continue reading Knowah’s Long Road to Wiskott-Aldrich Syndrome (WAS)

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Ireland fails the test!

What test you might ask? My twin ann has posted some of our story here. It is important for me, the other twin to add… Continue reading Ireland fails the test!

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Dare to Be Rare!

I have a rare disease. It’s called mastocytosis. http://www.tmsforacure.org/welcome.php If you say you have diabetes, heart disease, or cancer, people are immediately sympathetic! If you… Continue reading Dare to Be Rare!

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