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M
ama and Papa Said So’s goal in creating a Patient Insights Network (PIN) is to bring awareness to Potocki-Lupski syndrome. This is an extremely rare disease that is typically misdiagnosed until a genetic test is performed. In Potocki-Lupski Syndrome, genetic testing reveals a duplication on the 17th chromosome.
 
Patients who are diagnosed with Potocki-Lupski syndrome often experience varied symptoms and have varying qualities of life. For some, cases are mild and quality of life is minimally affected, while for others, quality of life is poor and symptoms extreme.
 
By gathering the experiences of families dealing with Potocki-Lupski, we can increase disease knowledge and help accelerate treatments in the search for a cure.
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M
ama and Papa Said So’s goal in creating a Patient Insights Network (PIN) is to bring awareness to Potocki-Lupski syndrome. This is an extremely rare disease that is typically misdiagnosed until a genetic test is performed. In Potocki-Lupski Syndrome, genetic testing reveals a duplication on the 17th chromosome.
 
Patients who are diagnosed with Potocki-Lupski syndrome often experience varied symptoms and have varying qualities of life. For some, cases are mild and quality of life is minimally affected, while for others, quality of life is poor and symptoms extreme.
 
By gathering the experiences of families dealing with Potocki-Lupski, we can increase disease knowledge and help accelerate treatments in the search for a cure.

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