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 hope to hold future clinics for young adults and pediatric patients, and ultimately establish an Alstrom Syndrome Center of Excellence!
Concurrently, during the weekend, we held the first meeting of the Stakeholder Steering Committee (SSC) as part of our recent PCORI Award. The SSC consists of 3 adults with Alstrom Syndrome, 3 parents, 3 physicians, and 3 researchers. The purpose of this inaugural meeting was to consider plans for the full engagement of the entire Alstrom Community at the international conference in May in Plymouth Mass. to develop stakeholder-centered priorities for research.
YOU are the heroes who will make this happen!!
February 2, 2015
