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Abby11

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2 reviews

Review for Chromosome Disorder Outreach, Inc., Boca Raton, FL, USA

Rating: 5 stars  

When we first learned of my son's genetic deletion we were given almost no information. Through searching online I stumbled on CDO and they were instrumental in helping me understand what it all means and things to expect, as well as helping me to feel like we weren't alone. CDO is an amazing wealth of information and I am so blessed to be a member!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

Role:  Client Served

Review for Chromosome Disorder Outreach, Inc., Boca Raton, FL, USA

Rating: 5 stars  

My son was diagnosed with a rare chromosomal deletion (5q11.2-q13.2) at 13 months of age and we were told there was no other information for us about this deletion. We felt completely alone. Then somehow I found Chromosome Disorder Outreach and became a member and was put in contact with many families who have similar deletions to my son. Through their newsletter I was also informed of a recently published article by a French geneticist outlining the similarities between 4 children who had my son's EXACT deletion. I was able to contact her and have my son's data included in her research of what is now know as 5q12.2 Deletion Syndrome. Without CDO, we would still feel like we were completely alone.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Role:  Client Served