From January 25th to 27th 2018 there will be the 21st edition of the Conference on Immune Pathology and Orphan Diseases , organized by the CMID ( Research Center for Immunopathology and Documentation on Rare Diseases, Coordination of Rare Diseases Piedmont and Valle d'Aosta ) and by the SCU of Nephrology and Dialysis of the Giovanni Bosco Hospital in Turin , directed by Professor Dario Roccatello .
Piedmont has always been at the forefront nationally in the field of rare diseases, with the extension of exemptions since 2005 and the presence - in many European reference networks - of hospitals such as the San Luigi Gonzaga in Orbassano ( EURO-Blood -NET ), Giovanni Bosco ( ERK-NET ) and the City of Health of Turin ( Endo-ERN and EURO-NMD ).
Almost a year has passed since the start of the activities of the European Reference Networks , international networks that bring together centers of excellence that follow patients affected by homogeneous rare disease groups and the implementation of the decree on essential levels of assistance has finally begun ( LEA) which also expands exemptions from participation in health care costs for patients suffering from rare diseases.
All the activities carried out in these areas - at regional, national and European level - aim to increase the appropriateness to provide patients with the best care available and make sustainable the maintenance of a public and universal health system such as that created 40 years ago in Italy, still considered among the top 3 in the world for spending efficiency.
Also this year the congress unites the three souls of the group coordinated by Professor Roccatello, a group which was recently awarded the name of Center of excellence for nephrological, rheumatologic and rare diseases by the University of Turin.
Rare diseases will be tackled already during the first day during a session dedicated to the European networks of reference with the presence, among others, of Dottoressa Domenica Taruscio ( National Center for Rare Diseases ), of Professor Ezio Ghigo (former Director of the School of Medicine of Turin) and of numerous European network reference coordinators.
Other sessions will be dedicated to lysosomal storage disorders , rare degenerative diseases now treatable with very high-cost drugs that require a multidisciplinary approach for an appropriate and sustainable management, to primitive lymphedema with a particular focus on self-care and patient empowerment , to the antiphospholipid antibody syndrome a rare haematological pathology that mainly affects young women with an increased risk of ischemia and abortions, and rare dental diseases .
Rheumatological diseases will be addressed on January 25 during a session dedicated to innovative therapies and the role of environmental and pharmacological risk factors .
The nephrologic aspects will be treated in two sessions, the first to be held on January 25th will be dedicated to the domiciliation of dialysis therapies at home : an approach that sees in the nephrology of the Giovanni Bosco Hospital one of the main Centers involved in Italy, and which allows associate a better quality of life for patients with an economic saving for the national health system. The second session will be held on January 26 and will be dedicated to onconefrologia , one
Patient empowerment will be the subject of two sessions on physical exercise (fitwalking project, kidney and rheumatic diseases) and on self-care of lymphedema .
Saturday 27 January will instead be dedicated to evidence-based medicine and the development of guidelines for the treatment of lupus nephritis and associated ANCA vasculitis , a project in which Professor Roccatello, the CMID and the structure of nephrology and dialysis of Giovanni Bosco Hospital are world leaders.
Ten years ago, a small group of Google researchers began developing a system to use data from research carried out on the search engine to estimate the incidence of influenza, thus giving rise to a new branch of epidemiology called Infodemiology : CMID researchers have applied these methods to the study of some rare immunological pathologies, producing results that will be illustrated during a specific session of the conference.
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