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spogrebinsky

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1 reviews

Review for Alagille Syndrome Alliance, Tualatin, OR, USA

Rating: 5 stars  

Thanks to the Alagille Syndrome Alliance we were able to find a lot of relevant information when our daughter was first diagnosed. They helped to connect us with other families in similar situations. Also, since Alagille is a rare disease, it was very important to connect to the right doctors. They were very helpful in finding the right doctor for us. Every four years Alliance organizes the Symposium for the families. It is a very informative event where they pull medical experts and families together for multi-day informational sessions. From what I heard, it is very rare to have such an active Alliance for a rare condition. Thank you for all your help.

How would you describe the help you got from this organization?

A lot

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?

2012

Role:  Client Served