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effin

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1 reviews

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

Rating: 5 stars  

My 3 year old daughter has 1p36 deletion syndrome. This syndrome has many devastating effects for your child including mental retardation, inability to walk or talk, hearing loss, heart problems, and seizures. The technology to identify the syndrome has really only been around in the past 10 years or so and used regularly in the past 5 years. So more and more children are getting diagnosed with this each year. The 1p36 Deletion Support and Awareness group has been a wonderful place to turn for information. Not much has been studied about this syndrome yet and there are no other children with it who live anywhere near us. The 1p36 Deletion Support and Awareness Group has provided me with a lifeline of support and information that I could not get anywhere else.

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?

2011

Role:  Client Served