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Alagille Syndrome Alliance

Rating: 5 stars   10 reviews 655

Nonprofit Issues:

Health, Cancer

Address:

10500 Sw Starr Drive Tualatin OR 97062 USA

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.

Target demographics:

Everyone with ALGS - infants, children, teens, young adults, adults... as well as their families, care givers, and health care providers.

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.

2012 Top-Rated Nonprofit
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More Info

503-885-0455
http://www.alagille.org

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Reviews for Alagille Syndrome Alliance

Rating: 5 stars  

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 run out of travel funds. Miracle Flights for Kids is paying for our next trip! We are so very grateful to them for helping not only our family but so many others.

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

Life-changing

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

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

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 see if they could send me some. I was pleasantly surprised to learn that their service extends world wide. I receive regular newsletters, I am able to access their message boards, I freely chat with people all over the world on facebook and have made some of the best friends I have. Most of whom I shall never meet, but who the alliance has united. Dealing with a rare disease can make you feel isolated, uninformed and helpless. The Alagille Syndrome Alliance provides facts, support, research grants and anything else they can think of to ease the lives of those connected to this disease, with a view to one day eradicating it completely. I will be forever grateful.

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

Life-changing

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

Was this review helpful? 
Rating: 5 stars  

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 ALGS and find doctors familiar with ALGS. Our 17 year ALGS journey has been so much less of a struggle because of the friends we have made and the support we have found through the Alliance.

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

Life-changing

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

Was this review helpful? 
Rating: 5 stars  

We have benefited greatly by this organization it has taught us a great deal about our sons condition and resources such as Colorado Children's Hospital contacts.

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

Life-changing

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?

2010

Was this review helpful? 
Rating: 5 stars  

After 6 months and many tests trying to figure out what was wrong, my daughter was diagnosed with Alagille Syndrome. It was great to have a diagnosis, but what did it mean??? The Alliance was the first place I ended up. I was able to get key information for the care of my daughter. I learned about CHOP and the annual Gehman picnic. We attended the symposium in SanFrancisco. We made freinds for life. It is a community where you can go for support and ask questions. What a blessing it has been.

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

Life-changing

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

Was this review helpful? 
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Role: General Member of the Public
Rating: 5 stars  

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!

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

Was this review helpful? 
Rating: 5 stars  

My daughter was born with Alagille syndrome. The Alagille Syndrome Alliance was a God send to me. I will forever be grateful for the love and support and encouragement I have recieved from them. It is a rare disease and I was able to find others who could help me navigate through the actual day to day functions that were missing in textbook articles.

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

Life-changing

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

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

My niece has Alagille Syndrome which is why I became involved with the Alliance. We started as a small group and have grown into a full fledged support group for ALGS families. We are now embarking on another chapter of our organization with our recent announcement of funding ALGS research. It is an exciting time to be a part of the Alliance, and I look forward to the future.

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Role: Professional with expertise in this field
Rating: 5 stars  

As a life science professional with the goal of developing treatments for patients organizations like the Alagille Syndrome Alliance are the key to bringing new treatments to patients. The alliance is not only focused on supporting patients and families in managing their condition but also focused on helping the life science community understand this disease and working together to provide funding for research and supporting research in many other ways. Often times it is organizations like the Alagille Syndrome Alliance that act as the collective voice of Alagille patients and families across the country that help make new therapies a reality.

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
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

Was this review helpful?