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

Rating: 5 stars  

This is an excellent support group that also sources/provides useful info and promotes awareness of the rare disorder 1p36 Deletion Syndrome. The love and sympathy from the members is a positive factor to what is otherwise an unraveling situation. Research surveys and professional papers are shared among the group, an annual conference is held to provide more exposure to experts on the disorder and to enable families to meet each other and share valuable memories. Fundraising is a big part of the group's intention to raise awareness, fund part of the annual conference and to help less fortunate members attend the conference.

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Very Well

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Role:  Client Served