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Phone: 503-885-0455
10500 Sw Starr Drive
Tualatin
Oregon 97062
USA
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Target demographics: Everyone with ALGS - infants, children, teens, young adults, adults... as well as their families, care givers, and health care providers.

Someone who had 3 hours of volunteer time could: help with researching available grants to fund publication of our revised ALGS in the Classroom booklet; or assist with filing or other clerical tasks in our office (if you live in the Portland OR area); or review a page or two of our website to identify updates that may be needed

Geographic areas served: Worldwide

Programs: We have a website at www.alagille.org with a wealth of information and links to helpful resources, as well as a bulletin board. We are on Facebook, Twitter and YouTube, publish a quarterly newsletter, and offer several helpful publications for families including a DVD on ALGS. Every three years we host a family conference, and in the years in between we host AGS Family Education Days.

Mission:
We support families and individuals with ALGS, provide up to date information on ALGS to patients and their health care providers, and connect patients with research opportunities. We are building a better life with ALGS through advocacy, education and research.
Results:
In 2013 we will be funding research grants and working on collaborating with our Medical Advisory Board on a patient registry, which will assist with research initiatives. We're hosting Family Education days in Boston, Seattle, and Kansas City or Omaha. Our ALGS in the Classroom booklet is being revised and we are compiling two FAQs - one on Questions for Specialists and one on Standard of Care. We continue to welcome new families to our organization and to maintain an active presence on Facebook.

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10/24/12
My daughter, Kassidy, was diagnosed on March 10, 2006, with stage IV neuroblastoma when she was 6 years old. She has undergone several doses of high dose chemo and transplant, radiation, and antibodies. We travel to Memorial Sloan Kettering Cancer Center in NYC. After 6 years of doing so, we have... more »
08/30/12
My son was diagnosed with Alagille Syndrome in 2009. The lists of facts and figures on the internet was terrifying. I could only find one charity specifically dedicated to ALGS, but it was based in the USA and I am from the UK. I was desperate for up to date information so I dropped them a line to ... more »
08/11/12
We were devastated and scared when we learned our newborn son had a rare liver disease. In 1995 there was almost no information about Alagille Syndrome (ALGS) on the internet. Finding the Alliance gave us hope. With their help we were able to connect with other ALGS families, learn more about ... more »
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3 hours of volunteer time for this nonprofit will...

help with researching available grants to fund publication of our revised ALGS in the Classroom booklet; or assist with filing or other clerical tasks in our office (if you live in the Portland OR area); or review a page or two of our website to identify updates that may be needed

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