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Cherilyn B.

172 profile views
1 reviews

Review for 1p36 Deletion Support & Awareness, Bend, OR, USA

Rating: 4 stars  

After my son was diagnosed from his neurologist that he has a rare chromosome disorder, he basically handed me a 3 page detailed handout explaining 1p36 . He advised me to join the 1p36 DSA site for support, which we did immediately! The support families get from this web site is remarkable! Through other families who are dealing with a child who has 1p36 this support group and research that develop from this is absolutely encouraging due to not having much information from the medical field to refer to! I sincerely hope that one day 1p36 will be more commonly understood by neurologist, and others in the medical field.

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

Life-changing

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

Likely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2012

Role:  Client Served