Sturge-Weber Foundation
Mission:
The Sturge-Weber Foundation’s (The SWF) international mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions. We support them with collaborative education and advocacy in tandem with translational research as we promote effective management and awareness.
Results:
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Croberts
06/24/11
My daughter was born January 2011 with a rare Syndrome known as Sturge Weber Syndrome. Sturge Weber only effects 1 in 200,000 births. So imagine being told your child has a rare syndrome that when u tell others they ask you to repeat it . Most medical professionals have not even heard of it. So ...
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CBru
06/24/11
We adopted a child with extensive Port Wine Stain and complications from it. The complications are soooo incredibly rare, that 2 top Vascular Anomalies reviews disagreed in some areas as to what is what with our son. And thus any recommended care from the doctors has been limited and not very ...
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Kenna J.
06/24/11
My daughter Carlie was born Sept 10, 2010. I remeber my husband and I telling the family about this cute Port-Wine birth mark she had on the right side of her face. A following day the doctor's told us that Carlie migt have some medical issues becuase of her birth mark. They wanted us to see an ...
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