Human Genetics and American Society of Nephrology Conferences
The NDI Foundation made it's official debut with information booths at two medical research conferences held this fall. The display featured a 3-dimensional model showing the known mutations of the X-linked human V2 receptor based on the work of Dr. Mariel Birnbaumer. The NDI Foundation web site was also available for perusal both in a printed version and online. We met 28 researchers, 19 clinicians, 8 representatives of other support groups, and 17 other individuals who dropped by our exhibit. These people will join those who are already part of our network serving the NDI community. Comments from the genetic and nephrology researchers who stopped to visit with us indicate they are much interested in the NDI Foundation and welcomed us into their communities.
The clinicians we met at the conferences will become part of a Clinician Directory which will soon be available both on our web site and in printed form for those without internet access. This resource will aid patients and their families in finding clinical treatment locations both at home and while traveling throughout the world.
An unanticipated bonus of our participation in these conferences was the opportunity to meet with the directors and administrators of other support foundations. Without exception these people proved to be more than willing to share their insights gained from operating foundations with goals similar to our own. With the benefit of their expertise we can get a strong start in areas such as policy, ethics, conflict of interest issues and government regulations. The Gordon Research Conferences is a training and education group that presents a series of intensive medical retreats each year. They have been particularly helpful as we prepare for our own medical conference which will be held March 2 to 4, l998 in La Jolla, California.