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Eileen J.

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1 reviews

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

Rating: 5 stars  

I am a member of a very special group named 1P36 Deletion Support and Awareness because my daughter has the deletion. She was not diagnosed until 8 years of age. I'm hoping that increased awareness will get children diagnosed sooner and more accurately. Although my child is considered mildly affected this group has been there to understand our daily challenges. This group has given us a wealth of knowledge and support. We feel we are finally understood and completely accepted.

I've personally experienced the results of this organization in...

getting together with several members and meeting various other children that have the deletion. Learning and understanding by comparison and others experiences.

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


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


How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?


How did you find this group?

Through the YAHOO group.

What, if any, change in your life has this group encouraged?

My life has changed because I no longer feel isolated or different.

Role:  Client Served & I am a parent advocate.