FOR IMMEDIATE RELEASE CONTACT: Jennifer Orange 416-409-9139
PATIENT AND SCIENTIFIC COMMUNITIES PARTNER TO IMPROVE DIAGNOSIS AND TREATMENT OF RARE DISEASE AT THE SECOND INTERNATIONAL SYMPOSIUM ON APS TYPE 1
JULY 13 TO 15, 2017 AT
STONY BROOK UNIVERSITY MEDICAL CENTER, STONY BROOK, NEW YORK
Leading international clinicians, researchers, patients and families will take part in a three day symposium to present and discuss new advances in solving the riddle of a rare disease, Autoimmune Polyglandular Syndrome Type 1 (“APS Type 1” or “APECED”). Over 100 participants are registered to attend this second international symposium.
Over the past three years, the APS Type 1 Foundation, together with physician-scientists, has been creating a research and support community where none existed in North America. Most patients spent their lives never knowing another patient with their disease, and most doctors do not know whom to call when they see a patient with its unusual cluster of symptoms. According to a 2011 study, the average diagnosis of APS Type 1 takes 10 long years. The APS Type 1 Foundation is determined to improve that statistic and to catalyze research on this rare disease by establishing a patient registry and identifying the mutated AIRE gene. Patients and family members have become determined citizen scientists, tracking their own symptoms, sharing treatment experiences, and finding new patients for studies.
That partnership between the citizen scientist and clinician/scientist will be on display at the Second International Symposium on APS Type 1, at the Wang Center at Stony Brook Medical Center, Stony Brook, NY, July 13 to 15, 2017. Clinicians and scientists from England, Sweden, Norway, Canada and the U.S., as well as patients and their families, will present latest findings and future prospects. Dr. Michail Lionakis of the National Institutes of Health is the keynote speaker. Patient Pablo Ramirez, a college student will facilitate the Young People’s Discussion.
Other presenters from Europe, Canada and the U.S. include Dr. Andrew Lane, Stony Brook University, U.S.; Dr. Olle Kampe, Karolinska Institutet, Sweden; Dr. Cheri Deal, University of Montreal, Canada; Dr. Louise Markhert, Duke University, U.S.; Dr. Audrey Parent, University of California, SF, U.S.; Dr. Eystein Husebye, University of Bergen and Haukeland, Norway; Dr. Bill Robinson, Stanford University, U.S.; Ms. Jennifer Orange, family member, Canada; Mr. David Seyfert, family member, U.S.; Mr. Brian Dwyer, family member, U.S., Dr. Asim Ali, Hospital for Sick Children, Canada and Mr. Todd Talarico, President APS 1 Foundation.
The first Symposium was held in 2015 at the Hospital for Sick Children, in Toronto, Ontario.
For more information, see the symposium web site at http://dklecher.wixsite.com/aps1symposium and the APS Type 1 Foundation at www.apstype1.org. Registration for the symposium is free.