purasyndrome.org
PURA Syndrome - PURA genePURA Syndrome is a rare, recently discovered genetic condition, caused through alterations within the PURA gene. Meet our PURA family, learn about research.
http://www.purasyndrome.org/
PURA Syndrome is a rare, recently discovered genetic condition, caused through alterations within the PURA gene. Meet our PURA family, learn about research.
http://www.purasyndrome.org/
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PURA Syndrome - PURA gene | purasyndrome.org Reviews
https://purasyndrome.org
PURA Syndrome is a rare, recently discovered genetic condition, caused through alterations within the PURA gene. Meet our PURA family, learn about research.
HelpSarah.org Links
http://www.helpsarah.org/links.html
Royal Children’s Hospital Victoria. Royal Children's Hospital - Children's Epilepsy Program. Unique Rare Chromosome Disorders Group. PURA gene parent support group. The HelpSarah.org Charitable Trust is a Tax Deductible Trust endorsed by the Australian Tax Office. ABN 65 118 913 317.
PURA Gene - Family Synapse
http://familysynapse.com/pura-gene
Aidan In the News. Was sequenced in 2014. We found two genetic mutations, and it’s opened a whole new door for us. Here’s Aidan’s PURA gene:. MADRDSGSEQGGAALGSGGSLGHPGSGSGSGGGGGGGGGGGGSGGGGGGAPGGLQHETQELAS KRVDIQNKRFYLDVKQNAKGRFLKIAEVGAGGNKSRLTLSMSVAVEFRDYLGDFIEHYAQLGPSQPPDLA QAQDEPRRALKSEFLVRENRKYYMDLKENQRGRFLRIRQTVNRGPGLGSTQGQTIALPAQGLIEFRDALAK LIDDYGVEEEPAELPEGTSLTVD S. For more information check out the Pura Syndrome website. The Stop Sign in Aidan’s Genes. Receiving a Rare Diagnosis. 7 Apr, 2014.
Receiving a Rare Diagnosis - Family Synapse
http://familysynapse.com/receiving-a-rare-diagnosis
Aidan In the News. Receiving a Rare Diagnosis. Middot; August 7, 2015. You met Sarah when she wrote this beautiful poem. About our PURA gathering. Now here she is again telling the story of her daughter receiving her PURA diagnosis. Photo: Faith Light Photography. And in closing this week of posts about Aidan’s rare diagnosis, I’d like to unveil our new PURA Syndrome website. Please share to help us raise awareness in an effort to further research and provide support to families. You may also like. Http:...
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PURA Syndrome - PURA gene
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