In addition to members, donors, doctors, sponsors, volunteers and others we now welcome ambassadors who care about our organization and offer support in one way or another. The first ambassador is already active.

One of our ambassadors is former Prime Minister Prof. Dr. Jan Peter Balkenende. He studied economic and social history and law at the Free University of Amsterdam. He presented his doctoral thesis on 'Government regulation and social organizations' and in 1993 he was named professor by special appointment. He served as prime minister from July 2002 until October 2010. Since December 1, 2011 he has been professor of Governance, Institutions and Internationalization at Erasmus University in Rotterdam (Netherlands). On 1 April 2011 he became a partner at Ernst & Young, where he was particularly involved with corporate responsibility and international affairs.

Dr. Stephen C. Groft has been the initiator and Director of the National Institute of Health (NIH, USA) of the Rare Diseases Office since the start in May 1983. He has been providing guidance and encouragement to rare disease patient advocates groups since the very beginning. He and his staff are well known in the patient community and have devoted particular attention to working with patient advocate groups in their efforts to stimulate research on their diseases. Under the leadership of Dr. Groft the NIH Office of Rare Diseases Research has hosted hundreds of scientific workshops and conferences with the NIH institutes and centers where patient advocates may hear the latest findings about specific rare diseases and interact with medical experts.


Sports is the passion of Monique Kalkman! Passion gives her energy, in other words 'Powered by Passion'. Since she was five she has loved sports and dreamed of being in the Olympics, and later the Paralympics. A healthy fourteen year old, Monique was diagnosed with cancer (Ewing tumor), which resulted in a spinal cord lesion and eventual confinement to a wheelchair. She became the first athlete to qualify in multiple Paralympic and world championships in two different sports. Twelve years later, she has a career in business, and now she has turned her attention to golf. In her job as manager of innovation and participation for Welzorg, she sets up initiatives and charities to promote the participation and representation of people with disabilities or illness.