Membership

Membership

How to Join

Membership in the Chromosome 9p Minus Network is free and available to parents or guardians of individuals with 9p Deletion Syndrome. Although based in the United States, the Network has members all over the world representing over 60 countries. Typically members speak English, but the Network has volunteer translators available to correspond in other languages.


To join the Chromosome 9p Minus Network, please fill out the Google form under 'Join'.  A Membership Services Committee member will reply to your membership request in a timely manner. Information needed to complete enrollment includes: the 9p Minus individual’s full name, date of birth, and karyotype (such as 46,XX,del9p24.3); family’s mailing address, email address, phone number, parent/guardian’s names, and sibling information (if applicable). An enrollment email is completed by a member of the Membership Services Committee.

Enrollment Request Form

   1. Are you a guardian of an individual who has been medically diagnosed with Chromosome 9p Minus?

    2. If YES, to the above question, then would you like to join a support group of over 850 families worldwide who have or are currently going through nearly the same situation as you and can help answer your questions?

  3. If YES, to both of the above questions, then click on the link below for a new tab to open up our MEMBERSHIP FORM.  One of our membership team members will look over your information on the form, verify the individual’s diagnosis and will initially contact you via email with more information.

Thank you and we all look forward to meeting you and your family!!!

Membership Form

Enrolled Member Update Form

This form is for our already established members who need to update any information (address, phone number, family member, etc.). Once you send this form, you will get a confirmation email that we have received your update.

Member Update

Our Online Community

The Chromsome 9p Minus Network’s online community of  9p Minus parents and caregivers offers a tremendous amount of information and support. The Network offers closed Facebook groups for members and extended family. These forms of information are vastly helpful to enrolled Network families–but in different ways.


Chromosome 9p Minus Network Facebook groups:

The “Chromosome 9p Minus Network” has 3 Facebook pages.  All pages are closed, but one is a “Family Group” that is available by request to extended members of the 9p Minus child’s immediate family.  This Family Page offers the opportunity for sharing 9pminus information, but still in a confidential closed group forum. Photos can be viewed or uploaded by members of the group which is encouraged. The second page is completely closed to the parents and primary caregivers of a 9p Minus individual.   In order to be approved as a member of the Member Only Facebook page, you first have to become a member of the Network, by sending in the Membership form located on the Membership tab. Our third page is dedicated to Research and is only available to those already joined the closed parents page.

Request to join our closed, parents only Facebook page
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