Membership in the Chromosome 9pminus Network is free and available to parents or caregivers of individuals with 9p Deletion Syndrome. Although based in the United States, the Network has members all over the world representing over 20 countries. Typically members speak English, but the Network has volunteer translators available to correspond in other languages.
To join the Chromosome 9pminus Network, please email firstname.lastname@example.org or complete the Enrollment Request Form. A Membership Services Committee member will reply to your membership request in a timely manner. Information needed to complete enrollment includes: the 9pminus individual’s full name, date of birth, and karyotype (such as 46,XX,del9p24.3); family’s mailing address, email address, phone number, parents’ names, and sibling information (if applicable). An enrollment phone call is completed by a member of the Membership Services Committee and the incoming parent(s) to answer questions.
Once enrolled, the newly enrolled family is mailed a Welcome Packet containing enrollment information, previous year’s yearbook, newsletters, etc. An invite to the 9pminus Yahoo eGroup is sent via email to the new family, as well.
*Enrolled families are encouraged to maintain updated mailing addresses, email addresses, and phone numbers to ensure uninterrupted correspondence.