Monosomy 9P, otherwise known as Alfi's Syndrome or 9P-, is a rare chromosome anomaly. Due to its rarity, parents of children diagnosed with 9P- are usually left in the dark because so little is known. Parents are left feeling isolated, fearful and alone.
This is where the support group comes in! In 1984, a handful of families began exchanging information about their own child and his/her achievements. We have now expanded to include families worldwide and with the help of the Internet our group continues to grow. We work mostly with the parents and children, but also with doctors, therapists and teachers. We now have a geneticist conducting research to update the clinical information to avoid giving new families the same dire diagnosis some of us were given.
We are a non-profit organization. We strive to educate, foster hope, and develop a greater understanding amongst our members and the community. We are dedicated to enriching the lives of our children and their families.