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

Rating: 5 stars  

1p36 DSA is a God send for us! Our daughter Kaylee was diagnosed with a rare genetic disorder known as 1p36 deletion syndrome at 6 months of age. We wanted to learn everything we could about 1p36 deletion but at the time there was nowhere to turn. There was little information on the internet and no families we could connect with at the time. We felt so alone and isolated. Can you imagine going to your child's pediatrician and he/she doesn't know anything about your child's diagnosis? This was what we had to face every time we encountered a doctor. We had to educate the medical community in our city. It was very frustrating and scary as parents. You can only imagine our excitement when 1p36 DSA came into existence. 1p36 DSA has made a big difference in our lives. We were able to connect with other families and share life experiences. The support group offered us wonderful resources, valuable information, and beautiful memories. Thanks 1p36 DSA for your love, support, and dedication!

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Role:  Volunteer