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Symposium 2014 Registration Is Live!


We are ready for online registration for Symposium 2014! 

Please go to our 2014 Symposium Page and click on the link next to Registration.  You will need to complete the online registration form and then click the "Pay Now" button to go to Acceptiva to submit your payment.  Don't forget to write down your registration fees before clicking on the "Pay Now" button because the amounts from the registration form do not transfer to Acceptiva.  

 

 

 

 The Symposium page includes:

  • The latest registration packet with lots of important information about the Symposium including the program, hotel information, child care and more. 
  • A link to the hotel website where you can book your rooms for the Symposium. 
  • A link to register your children for child care for the Symposium.
  • Follow this link to the Symposium page now and get signed up!

   


Rare Disease Day Official Video Is Out


  • Check out the brand new Rare Disease Day 2014 Video.  You can view it by clicking HERE.

First Issue of Liverlink (Winter 1994) a Humble Beginning


The first issue of Liverlink was published in the winter of 1994. Take a look inside to see where this all started.


Focus on Calcium and Bone Health by Alisha Rover, The Children's Hospital of Philadelphia


(originally published in Liverlink in the April - September 2000 Issue)

Why is calcium important?

Calcium is the single nutrient most likely to be missing from the American diet, and the government has identified low calcium intake as one of the priority nutritional problems in the U.S. Calcium's most important role is building mass in order to support physical activity throughout life and to reduce the risk of bone fractures. By the age of 17 approximately 90% of the adult bone mass will be established, therefore adequate calcium intake in adolescence is critical. Not consuming enough calcium forces your body to steal the calcium stored in your bones.


Lumena Pharmaceuticals begins Phase II Study on Anti-Itching Drug


Lumena Pharmaceuticals, a drug company that has been working to develop treatments for patients with rare liver diseases has delivered its first test dosage to a patient.  The specific drug delivered is LUM001 and was delivered to a patient with primary biliary cirrhosis (PBC). 

LUM001's development could have a huge impact on patients with a number of cholestatic liver diseases such as Alagille Syndrome, PBC and others that are characterized by impaired bile flow and the subsequent bile acid retention in the liver. The excess bile acid can lead to liver damage and ultimately liver failure.  In the CLARITY Phase II study, LUM001 is being evaluated for its ability to alleviate the symptom of severe itching associated with PBC.  Itching is a huge issue with Alagille Syndrome as well, so we will be watching this drug study closely.

[Copied from: http://www.pharmbiz.com - published on 10/30/13.]


There’s power in numbers. Help us build our patient registry!


The ALGSA announces our own disease registry! We invite all ALGSers to join, to provide de-identified medical information to the registry to help everyone in the global ALGS community – patients, families, researchers, clinicians, and pharmaceutical companies – learn more about ALGS. The goal is improved diagnosis and medical care, as well as empowerment of patients and families through knowledge, connections, and support. If you have any questions about the ALGSA CONNECT registry, or to opt in, please contact us at alagille(at)alagille.org.

Join the ALGSA CONNECT registry

 


Alagille Syndrome is a rare genetic disorder that can affect the liver, heart, and other parts of the body. Approximately one in every 70,000 children is born with Alagille Syndrome. In patients with Alagille Syndrome, the bile ducts are abnormally narrow, malformed and reduced in number. This prevents the bile ducts from carrying bile, which helps to digest fats, from the liver to the gallbladder and small intestine.

[Courtesy of Lumena - posted online: http://lumenapharma.com/products/cholestatic-liver-disease/alagille-syndrome-algs/]

 

 

 

 

 

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The information presented on this web site is provided for information purposes only. This information does not constitute medical advice and it should not be relied upon as such. The Alagille Syndrome Alliance does not engage in the practice of medicine. Under no circumstances, does the Alagille SyndromeAlliance recommend particular treatments for specific individuals, and in all cases recommends that you consult your physician before pursuingany course of treatment. 

The information presented on this website is provided for information purposes only.  This information does not constitute medical advice and it should not be relied upon as such.  The Alagille Syndrome Alliance does not engage in the practice of medicine.  Under no circumstances does the Alagille Syndrome Alliance recommend particular treatments for specific individuals, and in all cases recommends that you consult your physician before pursuing any course of treatment.

 

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