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1 reviews

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

Rating: 5 stars  

Patients affected by 1p36 Deletions and their families are rare enough that personal interaction and support is limited. To remedy this, I've been able to work with support group members to host annual conferences for families. At these conferences patients and families can interact, support each other, learn from doctors and therapists. The conferences have become an essential part of many group member's summer plans.

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

as I've seen my own family able to make contact with other families like mine and receive the support they need.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Board Member & Organized Conference for Support Group Members.