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Terisa B.

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Alagille Syndrome Alliance
August 9, 2012

My son has Alagille Syndrome and when he was diagnosed in March 2012 I felt my world came crashing down with the devastating news. But as I did research I found this Alliance became my go-to for updates, questions and most importantly, finding others to connect with!! I love the growth charts the Alliance has provided because they are more accurate than the standard charts for baby boys. I also love that my family gets to participate in our first Alagille Syndrome Awareness walk this year and I would have never known about it had I not connected with families in the Massachusetts areas. Great group and I'm so happy to be a part of it!

More feedback

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

MY ROLE:
General Member of the Public