Alport Syndrome Symposium 2010

The Alport Syndrome Symposium for Physicians, Researchers, and Families
August 28, 2010
New York Hilton - New York City, NY

The Alport Syndrome Symposium held in New York on Saturday, August 28th was a huge success!  With almost 500 attendees, including 200 family members, it was the largest event concentrating on Alport syndrome that has ever been held. Because of the enthusiastic response by all, the physicians and researchers have committed to holding similar and more frequent events on a regional basis. More people will then be able to directly interact with the medical community and receive the latest information on developments in Alport Syndrome.

About the Alport Syndrome Symposium 

The Alport Syndrome Symposium was a joint effort of the Alport Syndrome Foundation and the Alport Syndrome Treatments and Outcomes Registry (ASTOR), located at the University of Minnesota. It was held in conjunction with the 15th Congress of the International Pediatric Nephrology Association (IPNA) at the New York Hilton Hotel in New York City and supported by an educational donation provided by Amgen, Athena Diagnostics, and Alport Syndrome Hope for the Cure Foundation. Funding for 15 travel awards for junior investigators and trainees was provided by the National Institute of Health Office of Diabetes and Digestive and Kidney Diseases (NIDDK) and the Office of Rare Disease Research (ORDR).

Sharing new medical information 

One of the primary goals of the Alport Syndrome Symposium was to update families and physicians on the most current information and treatment methods, and to allow members of the medical community to share new findings with each other. The Symposium featured expert presenters who spoke on a broad range of Alport Syndrome-related topics:

·         Overview of Pathogenesis: Jeffrey H. Miner, PhD, Washington University (St. Louis, MO)

·         Current Diagnosis and Genetics: Martin C. Gregory, MD, PhD, University of Utah (Salt Lake City, UT)

·         Outcomes and Transplants: Patrick Niaudet, MD, Hôpital Necker-Enfants Malades (Paris)

·         Pharmaceutical Treatment: Christoph Licht, MD, University of Toronto (Toronto)

·         Biological Treatment: Oliver Gross, PD, MD, FASN, University of Göttingen (Göttingen, Germany)

·         Hearing Loss: Dominic Cosgrove, PhD, Boystown National Research Hospital (Omaha, NB)

·         Women and Alport Syndrome: Michelle Rheault, MD, University of Minnesota (Minneapolis, MN)

·         Registries/Trials: Clifford E. Kashtan, MD, University of Minnesota (Minneapolis, MN)

·         Research Process Overview: Clifford E. Kashtan, MD, University of Minnesota (Minneapolis, MN)

·         Children and Adolescents with Chronic Kidney Disease: Bradley Warady, MD, Children's Mercy Hospital (Kansas City, MO)

All of the presentations were informative to both the medical and patient community. Families were especially interested in the data on the success of current drug therapy using ACE inhibitors and ARBs showing prolonged kidney function if started early in the progression of the disease. In addition, families found the presentation about adherence issues with adolescents to be particularly useful, which stressed the need for the health care team to work closely with the patient and the family. 

Please visit the Alport Syndrome Foundation website to view 10 of the panel presentations: http://www.alportsyndrome.org/about-alport-syndrome/announcements/symposium-presentations/. 

Building an international community

The Symposium provided an opportunity for families from across the world — the United States, Argentina, Canada, France, Australia, Mexico and Puerto Rico — to gather in one place and build meaningful connections. Families dealing with Alport Syndrome can often feel isolated, and these connections help remind us that there are others facing the same struggles. 

The Symposium also introduced Alport Syndrome support groups from Canada, Europe and Australia. We are working toward building international alliances with these groups and look forward to working together in the fight against Alport Syndrome.

Looking ahead 

As we look to the future, we hope to build on the success of the Symposium to provide families dealing with Alport Syndrome with even more resources. Many of the families were delighted with the small group question and answer sessions at the end of the day. All agreed that the direct interaction with the presenters was extremely valuable.

On behalf of the ASTOR team we want to thank the The Alport Syndrome Foundation for it’s generous support of all Symposium activities.

*Text taken from Alport Syndrome Foundation Newsletter: 09.2010.