I am a ( Canadian) parent of a now, young adult with 6q deletion syndrome. As there is limited information, resources, advice, prognosis, etc... I am hoping that starting a discussion topic on this disorder, that we can be a resource not only for each other, but for any new patient diagnosed with 6q, or for any physician who can use the information we have to offer. My son who is now 21, only received his diagnosis aprox. 3 years ago. He is affected globally, physically, and intellectually. With an interstitial deletion of 6q14.1 – q15, it is my understanding that he has a noticeable different phenotype. Share your info, and together we may make the lives of those living with the condition, and those caring for them, a little easier.

Hi. I am a 37 yr old mom to a wonderful 7 week old daughter. This post is directly towards mfnolet. My daughter has Chromosome 6q deletion also, and I cannot believe your son has the same exact deletion sequence as my daughter, the 6q14.1-q15, and hers is also interstitial. I have her first genects appt next week, so I'm not sure what to expect. She had the Chromosome study done in the hospital, and that's what it came back as. How is your son doing? How are you making out, and would like to talk more with you about his progress if that is OK.I find it interesting you just found out at his age. I am new to all this , so anything you can share with me, would be so great!! Thank you so much.

To Katechipman Thank you for your reply. My name is Marie-France, but please call me MF. I have been waiting quite a while for someone to make a post. Will gladly share all that I can. Please contact me at MFNolet@Outlook.com. I am amazed that they diagnosed at such an early age, that's wonderful to know that testing is being done and recognized. I look forward to connecting with you.

Hi!! Iused the email you provided, however, it said the email is invalid?? I checked the spelling, and it still won't work. Please email me at kklawitter2535@gmail.com. Looking forward to hearing from you!!!