Chromosome 9p Minus Network
is a continually growing non-profit organization which welcomes you to learn, share, support, and connect. Our Network is solely comprised of parents and caregivers of individuals worldwide diagnosed with Chromosome 9p Deletion Syndrome, also known as "9p Minus", "9p-," "Alfi's Syndrome," and/or "Monosomy 9p". For over 25 years, our Network families have been raising awareness by exchanging information, discussing challenges/achievements, and getting moral support for their 9p Minus family member. This syndrome is an extremely rare chromosome anomaly, so many families with a loved one diagnosed with a 9p Deletion are left feeling isolated and yearning for information. Thanks to this Network, families now have a place to turn.
Our Network strives to educate, foster hope, and develop a greater understanding amongst its members and the community at large. Whether you are already a Network family, a newly diagnosed family or someone who has been touched by a special person with 9p Minus, thank you for taking the time to view this website!
Our Purpose
The Chromosome 9p Minus 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.
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Our History
Started by a single family in 1984, the Chromosome 9p Minus Network now supports hundreds of families around the world.
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Support For Families
Membership in the Chromosome 9p Minus Network is free and available to parents or guardians of individuals with 9p Deletion Syndrome. The Network has members all over the world representing over 60 countries.
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