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- EIN 34-1846713
- (920) 931-2644
- PO Box 71 Tillson NY 12486 USA
- www.9pminus.org
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Nonprofit Overview
Causes: Health, Voluntary Health Associations & Medical Disciplines
Mission: The Chromosome 9pminus Network is a nonprofit, parent-based support group with a mission to improve the lives of families affected by 9p Deletion Syndrome by connecting families, offering knowledge, and improving access to information about this rare genetic disorder.
Results: We have over 400 families worldwide enrolled in the 9p- Network with the majority residing in the United States, Canada, and England. We are a parent-based Network whose goal is to connect and support 9p- families by sharing information and knowledge. As you may realize, there is little information available to 9p- families through the medical community due to the rarity of the diagnosis.
Target demographics: parents/caregivers of children with Chromosome 9p Deletion syndrome
Geographic areas served: International Network of 9p- Parents/Caregivers
Programs: yearbooks, newsletters, online support groups, and triennial Family Reunions.