Attending the recent meeting in New York were (from left): Sami I. Said, MD, Chairman of NORD’s Medical Advisory Committee; Stephen C. Groft, PharmD, Director of the Office of Rare Diseases at NIH; Mary Dunkle, Stefanie Putkowski, RN, and Abbey Meyers, all of NORD; Frederick Kaplan, MD, of the University of Pennsylvania; Andreas Reimann, MBA, Chief Executive Officer of the German Cystic Fibrosis Association; and Edwin Kolodny, MD, of New York University.

Representatives of NORD, the Director of the NIH Office of Rare Diseases, and three U.S. rare-disease researchers described their work in a recent luncheon meeting with Eva Luise Köhler, the wife of the President of Germany, who serves as patron to the German organization for people with rare and chronic diseases (ACHSE). Frau Köhler and her husband were in the U.S. for a visit, and she had expressed interest in hearing about NORD’s programs and the work of U.S. rare-disease researchers.

The researchers who gave presentations were Frederick Kaplan, MD, of the University of Pennsylvania, who studies the bone disease known as FOP; Edwin Kolodny, MD, of New York University, who works with lysosomal storage diseases; and Sami I. Said, MD, of the State University of New York, an expert on pulmonary diseases including acute respiratory distress syndrome.

Frau Köhler was accompanied by two members of her staff and the chairman of the German Cystic Fibrosis Association, Andreas Reimann, MBA.

The meeting took place at the German Consulate on First Avenue and 49th Street. The NORD representatives spoke about NORD’s programs and services. The researchers described their work, and Stephen C. Groft, PharmD, Director of the Office of Rare Diseases at the National Institutes of Health, described the activities of his office.

Fr. Köhler is shown facing the camera, under a photograph of her husband. Abbey Meyers of NORD is at left.