Alström Syndrome International Represented at Precision Medicine Summit with President Obama

PRESS RELEASE  2-25-16 ALSTRÖM SYNDROME INTERNATIONAL 14 Whitney Farm Road Mount Desert, ME  04660 Voice: 207.244.7043 • Fax: 207.244.7678 E-mail: info@alstrom.org • https://www.alstrom.org Alström Syndrome International Represented at Precision Medicine Summit with President Obama Washington, DC (February 25, 2016) – Alström Syndrome International, a member of the Community Engaged Network for All (CENA), is represented […]

ASI’s INTERNATIONAL SILENT AUCTION

For those of you coming to the ASI Conference in May, and also for those who can not come.. YES, WE WILL HAVE OUR TRADITIONAL INTERNATIONAL SILENT AUCTION! If you would like to contribute, please bring (or send) an item for the auction from your country or state. It is particularly fun to see and […]

NEW FIRSTS FOR ASI IN BALTIMORE!

The first Alstrom Syndrome Multidisciplinary Clinic was held this weekend at Greater Baltimore Medical Center, in Baltimore Maryland. Organized by Dr. Clair Francomano Director of the Harvey Institute of Medical Genetics, the Clinic “kick off” included five adults with Alstrom Syndrome and seven physicians. Now that our first clinic has been a great success, we […]

ALSTROM SYNDROME INTERNATIONAL HONORED WITH PCORI ENGAGEMENT FUNDING AWARD

Alstrom Syndrome International was recently selected for the highly competitive Eugene Washington PCORI Engagement Funding Award. We will use the opportunity of the ASI Family Conference in May 2016 to begin involving individuals with Alstrom Syndrome, family members, and other stakeholders meaningfully in sharing and discussing what is important to YOU! The healthcare research process […]

Frequently Asked Questions about the ARC Registry

PLEASE PARTICIPATE IN THIS IMPORTANT PROJECT! LINK TO ARC SURVEY Alstrom Research Connect FAQs 1. How do I participate if I have low vision and use a screen reader? You can enlist the assistance of a family member or friend to go through the process of setting up your account and your privacy settings.  You can […]

Alstrom Research Connect launches today!!

At last, the Alstrom Research Connect and Family Exchange has launched!  Find out more about this patient-centered registry that will enable researchers as well as other families to learn more about the syndrome as they work towards a cure.  You control your information!  YOU can drive research forward!  Sign up today!! To enter the ARC Registry, […]