A Tragic Message from the ASI Team
All, The evening of September 6th, Jan Marshall, the Chair, Scientific Advisory Board and Board Member of Alström Syndrome International passed away quickly to unforeseen health issues. Jan was truly the heart of ASI, and her loss will be very challenging to overcome. She was our mentor, “Mama”, the point of solace, advice, and support for thousands […]
Call for Photos!
Call for photos! If you have photos from the recent conference in Plymouth, MA, now you can share them! Follow the link and instructions below to send your photos to ASI for inclusion in the photo library! Send Photos to ASI for Uploading To send your photos to ASI for inclusion in the library, simply […]
Alström Syndrome International Represented at Precision Medicine Summit
Washington, DC (February 25, 2016) – Alström Syndrome International, a member of the Community Engaged Network for All (CENA), is represented at the Precision Medicine Initiative Summit being hosted by President Obama today! Amidst several other ‘health data flow’ announcements, Sharon Terry, CENA Principal Investigator, will announce that the Patient Powered Research Networks (PPRN) of […]
Conference Agenda and Schedules now Online!
We have added some new files and pages so that you have early access to all of the activities and the full conference schedule. We also have included links to the websites for all of our activities at this year’s conference. The schedules are available as both HTML or PDF, so you can print them, […]
RARE DISEASE DAY
FEBRUARY 29, 2016
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 […]
Support Alstrom Syndrome International on Giving Tuesday!
December 1, 2015 is Giving Tuesday. Spread the word and show your support for ASI No donation is too small! Click here to donate
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 […]
