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Nonprofit Overview

Causes: Digestive Diseases & Disorders, Health

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.

Community Stories

7 Stories from Volunteers, Donors & Supporters

Client Served

Rating: 5

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.

1 Taricia B.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

Ana_4

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.

Julee S.

Client Served

Rating: 5

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.

Client Served

Rating: 5

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.