000 04901nam a22005535i 4500
001 978-3-642-38643-5
003 DE-He213
005 20200421112044.0
007 cr nn 008mamaa
008 131021s2014 gw | s |||| 0|eng d
020 _a9783642386435
_9978-3-642-38643-5
024 7 _a10.1007/978-3-642-38643-5
_2doi
050 4 _aR856-857
072 7 _aMQW
_2bicssc
072 7 _aTEC009000
_2bisacsh
082 0 4 _a610.28
_223
245 1 0 _aRare Diseases in the Age of Health 2.0
_h[electronic resource] /
_cedited by Rajeev K. Bali, Lodewijk Bos, Michael Christopher Gibbons, Simon Ibell.
264 1 _aBerlin, Heidelberg :
_bSpringer Berlin Heidelberg :
_bImprint: Springer,
_c2014.
300 _aXXXIII, 292 p. 14 illus.
_bonline resource.
336 _atext
_btxt
_2rdacontent
337 _acomputer
_bc
_2rdamedia
338 _aonline resource
_bcr
_2rdacarrier
347 _atext file
_bPDF
_2rda
490 1 _aCommunications in Medical and Care Compunetics,
_x2191-3811 ;
_v4
505 0 _aPart I: Rare and Orphan Diseases -- Why R&D into Rare Diseases Matter -- Vignette: Autoimmune Polyendocrine Syndrome Type I (APS 1) -- Rare Diseases: How Genomics has Transformed Thinking, Diagnoses and Hope for Affected Families -- Vignette: A Giant of a Man: Simon Ibell (MPS II) -- Innovative Funding Models for Rare Diseases -- Rare Diseases: The Medical and the Disability Perspectives in the Age of 2.0 -- Vignette: Taking Control of Thalassemia -- Industry Perspectives on Orphan Drug Development -- Part II: Health 2.0 -- Health 2.0: The Power of the Internet to Raise Awareness of Rare Diseases -- Vignette: Living with NOMID: Michael's Story -- Health 2.0 and Information Literacy for Rare and Orphan Diseases -- Social Media and Engaging with Health Providers -- Vignette: Hope-Overcoming Fabry -- Empowering the Rare Disease Community: Thirty Years of Progress -- Part III: Patient Perspectives and Empowerment Issues -- The Role of Social Media in Healthcare: Experiences of a Crohn's Disease Patient -- Vignette: The Blessings and Curse of Diagnosis: Myasthenia Gravis -- Noah's Hope: Family Experiences of Batten Disease -- Using Technology to Share Information: Experiences of Oesophagus Atresia (OA) and Tracheaoesophageal Fistel (TOF) -- Vignette: MPSIIIA (Sanfilippo) -- The Empowered Patient in the Health System of the Future -- Vignette: The Journey of a Lifetime -- Personalized Medicine: A Cautionary Tale or Instructional Epic -- Part IV: Closing Gaps: Promising Research and Future Considerations -- Managing Communication for People with Amyotrophic Lateral Sclerosis: The Role of the Brain-Computer Interface -- Vignette: The Wilderness -- Opportunities and Challenges for Supporting People with Vascular Dementia Through the Use of Common Web 2.0 Services -- Vignette: Recessive Dystrophic Epidermolysis Bullosa (RDEB): Sibling Experiences -- Health Policies for Orphan Diseases: International Comparison of Regulatory, Reimbursement and Health Services Policies -- Vignette: Route 125 (October 2009) -- Rare Diseases Challenges and Opportunities -- Epilogue.
520 _aThis text focuses on various factors associated with orphan diseases and the influence and role of health information technologies. Orphan diseases have not been adopted by the pharmaceutical industry because they provide little financial incentive to treat or prevent it. It is estimated that 6,000-7,000 orphan diseases exist today; as medical knowledge continues to expand, this number is likely to become much greater.  The book highlights the opportunities and challenges in this increasingly important area. The book explores new avenues which are opened by information technologies and Health 2.0, and highlights also economic opportunities of orphan disease medicine. The editors of this new book have international experience and competencies in the key areas of patient empowerment, healthcare and clinical knowledge management, healthcare inequalities and disparities, rare diseases and patient advocacy.
650 0 _aEngineering.
650 0 _aHealth informatics.
650 0 _aBiomedical engineering.
650 0 _aHealth economics.
650 0 _aMedical economics.
650 1 4 _aEngineering.
650 2 4 _aBiomedical Engineering.
650 2 4 _aHealth Informatics.
650 2 4 _aHealth Informatics.
650 2 4 _aHealth Economics.
700 1 _aBali, Rajeev K.
_eeditor.
700 1 _aBos, Lodewijk.
_eeditor.
700 1 _aGibbons, Michael Christopher.
_eeditor.
700 1 _aIbell, Simon.
_eeditor.
710 2 _aSpringerLink (Online service)
773 0 _tSpringer eBooks
776 0 8 _iPrinted edition:
_z9783642386428
830 0 _aCommunications in Medical and Care Compunetics,
_x2191-3811 ;
_v4
856 4 0 _uhttp://dx.doi.org/10.1007/978-3-642-38643-5
912 _aZDB-2-ENG
942 _cEBK
999 _c56821
_d56821