About ARC

ARC logo

NOTE: ARC is NOT compatible yet for mobile devices!  Use your laptop or desktop.

Dear Alström Family and Friends,
The time is here! I am very proud to announce the launch today of ARC (Alström Research Connect and Family Exchange), a new and exciting step in patient-centered advocacy and outreach. And we need you!
This is truly a transformational time for Alström Syndrome International. We are finally recognized on a national scale through this project and we take our seat among prominent genetic, rare disease, and advocacy organizations. As part of the Genetic Alliance‘s Community Engaged Network for All (CENA) Project, ASI leads the way in a new dawn of information control and sharing that will impact diagnosis, treatment, and research.
ARC allows you to control your information and share it with whom you choose in an easy, user-friendly format. The success of advocacy, and the profound impact we can have on rare disease research, depends on all of us and our active engagement. You are the key!
I am very proud of our ARC project team, led by the efforts of Jan Marshall as Principal Investigator. Our outstanding team, Robin Marshall, Cassie Johnston, Brittany Foor, Tim Foor and a host of other volunteer demo testers, has made this endeavor a joy to undertake!
All questions, comments and concerns can be directed to info@alstrom.org.  Most importantly, please PARTICIPATE! Visit the ARC Registry to start your experience today!
We appreciate you and we thank you for being part of this exciting new chapter for Alstrom Syndrome International and, indeed, for rare disease advocacy and research worldwide.
Again, many thanks and best wishes to all,

Phyllis Aschenbrenner
Chair, Board of Directors
Alström Syndrome International

Registry Flyer
Brochure-ASI registry
Sharon Terry, Genetic Alliance, webinar describing the CENA Project