Rare Diseases in the Age of Health 2.0

Drs Lodewijk Bos is founder and president of the International Council on Medical and Care Compunetics (ICMCC), an international foundation operating as the knowledge centre for medical and care compunetics (COMPUting & Networking, its EThICs and Social/societal implications). He is E-i-C of the Springer Journal Health and Technology and series editor of Communications in Medical and Care Compunetics. Dr Rajeev K Bali is a Reader in Healthcare Knowledge Management at Coventry University, UK. His main research interests lie in clinical and healthcare knowledge management. He is well published in peer reviewed journals and conferences and has been invited internationally to deliver presentations and speeches. Dr M Chris Gibbons MD is Associate Director of the Johns Hopkins Urban Health Institute and an Assistant Professor at the Johns Hopkins Schools of Medicine and Public Health. He is an urban health expert and informatician who works primarily in the area of consumer health informatics where he focuses on using health information and communications technologies to improve urban healthcare disparities. Simon Ibell is an advocate for human potential and a role model for persons with disabilities. Ibell's condition, known as MPS II (mucopolysaccharidosis) or Hunter syndrome, is rare and is the result of an enzyme deficiency, which affects most of his major organs, his joints, and is both painful and debilitating. The iBellieve Foundation is Simon's official organization that aims to conquer MPS II and related Lysosomal Storage Disorders.