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dheater1

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1 reviews

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

Rating: 5 stars  

I can't say enough about this non profit organization. When our grandson was born with this syndrome we could not get any answers. It was not very well known by the doctors. We searched the internet for any help we could get and came upon this group. They are more like family to us and have helped us through a lot of hard times. We went from being scared and feeling all alone in this journey to finding a whole "family"to travel this road with. Every year in a different state they have a conference to bring families together for support. Doctors and guest speakers are there to help families learn more about the syndrome and it has grown so much. When your own doctors don't know what to do all we have to do is reach out to this group and all the families that understand what is going on and usually you can find the answers to take back to your doctor and get the help you need. We have been truly blessed and I can't say enough about how much they do for everyone!

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