Events

The topics of this year’s European Platform for Patients’ Organizations, Science and Industry workshop will include: Science – the determinants of rare disease research in Europe: understanding the current and future European Research and Development challenges and opportunities; Regulation – Europe and beyond: developing future regulations and policies for better...
This seminar presents current studies that contribute to a fuller understanding of the pathogenesis, epidemiology and outcomes of encephalitis. For further details please contact the Seminar’s Web Site
The aim of the workshop is to help formulate concrete recommendations that will lead to: Greater involvement of patients in the HTA process; Better targeted allocation of limited resources to the most effective treatments and practices; More streamlined co-ordination and engagement between HTA agencies and patients; and Faster access to...
Main topics include monogenic disorders, clinical genetics and dysmorphology, cytogenetics and molecular cytogenetics, and other relevant subjects, as well as workshops on Egyption PKU genotypes, genodermatoses, clinical genetics discussion of rare diseases, and much more. For further details, please contact the Conference Web Site
The meeting will bring together physicians and scientists interested in these diseases to meet face-to-face and facilitate interactions. The goal is to identify areas of research opportunity that will promote understanding of the causes and provide experimental and clinical justification for novel treatments of pemphigus and pemphigoid. For further details...
The nervous system is a major target in inborn errors of metabolism (IEM). Neuro-metabolic disorders constitute an expanding and complex field in which it is difficult to acquire a specific education and training From the perspective of IEM specialists, disorders presenting exclusively with neurological manifestations generally have a more difficult...
Early diagnosis and management of newborns and infants with inherited metabolic disorders is essential to the affected children’s outcome. However the quick and correct recognition of specific inherited metabolic disease in neonates is a challenge for neonatologists. It may be diffi cult, especially in critically ill neonates, to distinguish between...
Optimising Orphan Drug Development Tailor a specific approach for orphan drug product development across various rare disease classifications and optimise the commercial aspects 15-16 Nov 2010: Brussels, Belgium 10 years on since the introduction of the EU Orphan Medicinal Products Regulation policy makers are reviewing these with a time limit...
Centric Health Resources Presents Third Annual Ultra Orphan Conference 2010, “Emerging Commercialization Strategies for Addressing the Needs of Ultra- Orphan Patients” September 27 – 29, 2010, The Westin Hotel, St. Louis, Mo. Invitation Only Event. Complimentary Registration. Limited Seating. (http://www.centrichealthresources.com/2010Conference/)  CHESTERFIELD, Mo. – August 11, 2010 – With orphan drug...
The conference brings together public health professionals to encourage the exchange of scientific and public health information on global emerging infectious disease issues. The International Conference on Emerging Infectious Diseases was first convened in 1998; ICEID 2010 marks its seventh occurence. The conference brings together public health professionals to encourage...
There has been a significant increase in the level of activity and attention being paid to the development of therapeutics for neglected diseases over the past five years, but there are still considerable challenges in the road ahead. Diseases in the developed world receive a disproportional investment because of the...
Encephalitis Global, Inc. is happy to invite FACES (Friends And Caregivers, Encephalitis Survivors) to join in a social event in Portland Oregon. This is our 8th annual Encephalitis Conference! Similar to our FACES 2007 in Nashville, this year’s FACES is a get together. No meetings, no speakers, no registration fee,...
Current gaps in knowledge in this area will be identified and research priorities will be formulated. The workshop summary will provide the National Institute of Allergy and Infectious Diseases (NIAID) and the scientific community a template to address the scientific and clinical issues related to this difficult area of neonatal...
Anticipated goals and use of results: Workshop participants will have an unprecedented opportunity to synthesize relevant functional, experimental, and human data on MYC-translocation to gain etiologic insight and provide direction for further research.
Presenting new developments in basic and clinical science to bear on the specific issues of Behçet Disease (BD). Topics to be covered will include immunology of BD, vasculitis in BD, genetic basis of BD, regional inflammation and paediatric BD. The programme will also include debates on topics of current interest...
This year’s event – Measures of Progress – Evaluating management outcome in childhood disability – will update and clarify the multidimensional model of disablement specifically applied to management of children with neurodevelopmental disability. Emphasis is on the need for reliable measurement of management outcomes through new findings, from functional imaging...
The goals of the 2010 Workshop is to provide a platform that will assemble clinicians and scientists, integrate their findings, and facilitate new directions within both clinical and basic science research. The main focus is to bring basic and clinical scientists together to promote collaboration and progress in Progeria research....
Forge Valuable Patient Advocacy and Access Alliances throughout Orphan Drug Development and Commercialization Each year, CBI works collaboratively with NORD to develop a summit in support of a common goal to serve the rare disease community. Building off of a successful four-year history, this summit assembles industry stakeholders and key...