Connect with us...

    

 

ALGS Kids rock!

  

 

View and download the latest version of our newsletter, Links4Life

 

Email this page to a friend
module by Spiral

New Opportunities to Participate in the ITCH Study


Riley Hospital for Children and Seattle Children's Hospital are now open and enrolling for the ITCH study. This is a 13-week study of LUM001 versus placebo in children with ALGS who suffer from itching. Individuals who complete the ‘ITCH’ study will be able to enroll in a long-term study to receive LUM001. For more information on ITCH at Seattle and Riley, please search for LUM001 on www.clinicaltrials.gov.


Season of Giving


As we navigate this season of giving, please consider donating to the Alagille Syndrome Alliance. This has been an exciting year for our community and so many great plans are in the works for 2015. With your support we can make this happen! Here is a link to our online donation system: https://secure.acceptiva.com/?cst=773aff


Help Us Plan New Workshops and Forums


The ALGSA is planning new online workshops and forums that will provide relevant information, share new updates, and provide our community with an opportunity to connect in an online environment. Please take a few moments to rank your interests and share your ideas: https://www.surveymonkey.com/s/ALGSAOnline


Lumena/Shire 'ITCH' Study


The Lumena/Shire ‘ITCH’ study is now open! Dr. Nanda Kerkar at Children’s Hospital LA is enrolling patients. We will let you know as soon as other ChiLDReN Network centers open up. This is a 13-week study of LUM001 versus placebo in children with ALGS who suffer from itching. Everyone who completes the ‘ITCH’ study will be able to enroll in a long-term study where everyone will receive LUM001. For more information please search for LUM001 on www.clinicaltrials.gov. Another study of LUM001 called ‘ICONIC’ is enrolling patients in Vancouver (Canada), Madrid (Spain), Lyon and Paris (France), details can also be found on www.clinicaltrials.gov.


Symposium 2014 Video Available to View


In case you missed it, we have all the Symposium videos available to view on our YouTube channel. You can catch sessions you missed or watch the whole thing if you want to. Check them out here: ALGSA YouTube Channel

 

 

 

 

 


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

 

 

 

Follow us on Twitter
config

Donate safely and securely online now.

Thank you!

  

 

Home | Site Updates | Site Map

 

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.

 

Copyright © 1998 - 2014. The Alagille Syndrome Alliance - All Rights Reserved.