International conferences on rare diseases: initiatives in commitment, patient care and connections

An Australian GP’s pilgrimage to Rome to sound the voice of primary care

Rather than finishing paperwork after a busy Monday in a Katoomba general practice, I (A W K) found myself sitting (jet-lagged) in a marble auditorium in Rome within the Istituto Superiore di Sanità (Institute of Public Health; Box 1) with about 200 other conference participants from the United States, Australia, and more than 22 different European Union (EU) and non-EU member states. We were waiting for an announcement by the Honourable Livia Turco, the Italian Minister of Health. An article I co-authored, which was published in the Journal in July 2006,1 had led to an invitation to participate in the 2-day International Rare Disease Conference (IRDC) and the subsequent 3-and-a-half-day NEPHIRD (Network of Public Health Institutions on Rare Disease) conference organised by Dr Domenica Taruscio, Director of the Centro Nazionale Malattie Rare (National Centre for Rare Diseases) in Rome, together held from 18–23 September 2006.