The Chromosome 9p Minus Network is extremely valuable to all families affected by 9p Deletion Syndrome–newly diagnosed or long-standing diagnoses. Since so little information is available to families through medical sources, often the most helpful information comes from our fellow members. The Network enables families affected by 9p Deletion Syndrome to establish contact with others, exchange information relating to their 9p Minus individual, and to gain support from their fellow members.

Below are some of the various ways members exchange information within our Network. Access to all methods of information are free and available upon completion of enrollment. Participation is voluntary but highly encouraged for each activity.

Facebook: The “Chromosome 9p Minus Network” group can be found on Facebook. Members from around the world share their 9pminus loved one with others on our closed/private groups. Membership is approved and limited to enrolled families. It is a wonderful way to share the Network. We have a second closed group for friends and extended family where Grandparents, siblings, Aunts, Uncles and therapists can also take part. We keep these separate for privacy reasons. Administrators of the group are volunteer Network families.

Yearbooks: The yearbooks are perhaps the most treasured source of information, support, and encouragement available through the Network. Once a year in February, yearbook guideline letters are mailed to enrolled families to instruct them on submitting a yearbook letter. Deadline for entries is April 15th. During early summer, each member of the Network is e-mailed a colorful yearbook full of submissions and photos by fellow Chromosome 9p Minus Network families. Yearbooks are supported by all fundraisers and made possible by the members of the Activities Committee.

Family Reunions: Every three years, there is a weekend gathering of 9p Minus families held in various locations. It is a wonderful opportunity to meet other 9p Minus families and to share your experiences. In the past there have been roundtable discussions, presentations from genetic scientists, doctors and councilors, and entertainment for the entire family. The next family reunion will be held in Palm Desert, California June 2025. Family Reunions are made possible by the members of the Family Reunion Committee and Host Family.

Dr. Alfi Memorial Family Reunion Sponsorships: The Network offers sponsorships for first-time attendees and those in need, this will be available for future reunions with thanks to funds initially set up by Dr. Alfi and continually supported by our fundraisers and generous donors. Information regarding upcoming Family Reunions and sponsorship opportunities is sent to enrolled families as the event approaches.

Newsletters: Quarterly each year, the Network publishes and e-mails newsletters to all members. Each newsletter is filled with information from the Board of Directors, results from fundraisers, updates on enrollment. Newsletters are supported by the annual various fundraisers and made possible by the Board of Directors and Network family volunteers.

Birthday Cards: Each year, enrolled 9p Minus individuals receive a birthday card from their 9p Minus Network friends. The birthday card program is made possible by a volunteer 9p Minus parent.