TY - BOOK PY - 2008 DA - 2008// TI - Communication from the commission to the European parliament, the council, the European economic and social committee and the committee of the regions on Rare Diseases: Europe’s challenges {SEC (2008)2713} {SEC (2008)2712} ID - ref1 ER - TY - BOOK PY - 2014 DA - 2014// TI - Implementation report on the commission communication on rare diseases: Europe’s challenges [COM (2008) 679 final] and council recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02) ID - ref2 ER - TY - JOUR PY - 2009 DA - 2009// TI - Council recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02) JO - Off J Eur Union VL - C 151 ID - ref3 ER - TY - JOUR AU - Schieppati, A. AU - Henter, J. -. I. AU - Daina, E. AU - Aperia, A. PY - 2008 DA - 2008// TI - Why rare diseases are an important medical and social issue JO - Lancet VL - 371 UR - https://doi.org/10.1016/S0140-6736(08)60872-7 DO - 10.1016/S0140-6736(08)60872-7 ID - Schieppati2008 ER - TY - JOUR AU - Molster, C. AU - Urwin, D. AU - Di Pietro, L. AU - Fookes, M. AU - Petrie, D. AU - van der Laan, S. PY - 2016 DA - 2016// TI - Survey of healthcare experiences of Australian adults living with rare diseases JO - Orphanet J Rare Dis VL - 11 UR - https://doi.org/10.1186/s13023-016-0409-z DO - 10.1186/s13023-016-0409-z ID - Molster2016 ER - TY - JOUR AU - Bogart, K. R. AU - Irvin, V. L. PY - 2017 DA - 2017// TI - Health-related quality of life among adults with diverse rare disorders JO - Orphanet J Rare Dis. VL - 12 UR - https://doi.org/10.1186/s13023-017-0730-1 DO - 10.1186/s13023-017-0730-1 ID - Bogart2017 ER - TY - BOOK PY - 2013 DA - 2013// TI - Nationaler Aktionsplan für Menschen mit Seltenen Erkrankungen ID - ref7 ER - TY - JOUR AU - Fine, J. -. D. AU - Bruckner-Tuderman, L. AU - Eady, R. A. J. AU - Bauer, E. A. AU - Bauer, J. W. AU - Has, C. PY - 2014 DA - 2014// TI - Inherited epidermolysis bullosa: updated recommendations on diagnosis and classification JO - J Am Acad Dermatol VL - 70 UR - https://doi.org/10.1016/j.jaad.2014.01.903 DO - 10.1016/j.jaad.2014.01.903 ID - Fine2014 ER - TY - JOUR AU - Volz, A. AU - Has, C. AU - Schumann, H. AU - Bruckner-Tuderman, L. PY - 2007 DA - 2007// TI - Network epidermolysis bullosa: molecular pathomechanisms and novel therapeutic approaches JO - JDDG J Dtsch Dermatol Ges. VL - 5 UR - https://doi.org/10.1111/j.1610-0387.2006.06181.x DO - 10.1111/j.1610-0387.2006.06181.x ID - Volz2007 ER - TY - JOUR AU - Hirsch, T. AU - Rothoeft, T. AU - Teig, N. AU - Bauer, J. W. AU - Pellegrini, G. AU - De Rosa, L. PY - 2017 DA - 2017// TI - Regeneration of the entire human epidermis using transgenic stem cells JO - Nature VL - 551 UR - https://doi.org/10.1038/nature24487 DO - 10.1038/nature24487 ID - Hirsch2017 ER - TY - JOUR AU - Ahmad, R. -. C. S. AU - Bruckner, A. L. PY - 2014 DA - 2014// TI - A survey of epidermolysis bullosa care in the United States and Canada JO - Pediatr Dermatol VL - 31 UR - https://doi.org/10.1111/pde.12258 DO - 10.1111/pde.12258 ID - Ahmad2014 ER - TY - JOUR AU - Aymé, S. AU - Kole, A. AU - Groft, S. PY - 2008 DA - 2008// TI - Empowerment of patients: lessons from the rare diseases community JO - Lancet VL - 371 UR - https://doi.org/10.1016/S0140-6736(08)60875-2 DO - 10.1016/S0140-6736(08)60875-2 ID - Aymé2008 ER - TY - JOUR AU - Angelis, A. AU - Tordrup, D. AU - Kanavos, P. PY - 2015 DA - 2015// TI - Socio-economic burden of rare diseases: a systematic review of cost of illness evidence JO - Health Policy VL - 119 UR - https://doi.org/10.1016/j.healthpol.2014.12.016 DO - 10.1016/j.healthpol.2014.12.016 ID - Angelis2015 ER - TY - JOUR AU - Tabolli, S. AU - Sampogna, F. AU - Di Pietro, C. AU - Paradisi, A. AU - Uras, C. AU - Zotti, P. PY - 2009 DA - 2009// TI - Quality of life in patients with epidermolysis bullosa JO - Br J Dermatol VL - 161 UR - https://doi.org/10.1111/j.1365-2133.2009.09306.x DO - 10.1111/j.1365-2133.2009.09306.x ID - Tabolli2009 ER - TY - JOUR AU - Tabolli, S. AU - Pagliarello, C. AU - Uras, C. AU - Di Pietro, C. AU - Zambruno, G. AU - Castiglia, D. PY - 2010 DA - 2010// TI - Family burden in epidermolysis bullosa is high independent of disease type/subtype JO - Acta Derm Venereol VL - 90 UR - https://doi.org/10.2340/00015555-0947 DO - 10.2340/00015555-0947 ID - Tabolli2010 ER - TY - JOUR AU - Mellerio, J. E. AU - Robertson, S. J. AU - Bernardis, C. AU - Diem, A. AU - Fine, J. D. AU - George, R. PY - 2016 DA - 2016// TI - Management of cutaneous squamous cell carcinoma in patients with epidermolysis bullosa: best clinical practice guidelines JO - Br J Dermatol VL - 174 UR - https://doi.org/10.1111/bjd.14104 DO - 10.1111/bjd.14104 ID - Mellerio2016 ER - TY - JOUR AU - Kiritsi, D. AU - Nyström, A. PY - 2018 DA - 2018// TI - Recent advances in understanding and managing epidermolysis bullosa [version 1; referees: 2 approved] JO - F1000Research VL - 7 UR - https://doi.org/10.12688/f1000research.14974.1 DO - 10.12688/f1000research.14974.1 ID - Kiritsi2018 ER - TY - JOUR AU - Uitto, J. AU - Bruckner-Tuderman, L. AU - Christiano, A. M. AU - McGrath, J. A. AU - Has, C. AU - South, A. P. PY - 2016 DA - 2016// TI - Progress toward treatment and cure of epidermolysis bullosa: summary of the DEBRA International research symposium EB2015 JO - J Invest Dermatol VL - 136 UR - https://doi.org/10.1016/j.jid.2015.10.050 DO - 10.1016/j.jid.2015.10.050 ID - Uitto2016 ER - TY - STD TI - Denyer J, Pillay E, Clapham J. International Consensus Best Practice Guidelines for Skin and Wound Care in Epidermolysis Bullosa: Wounds Int; 2017. http://www.debra-international.org/clinical-guidelines/complete-eb-guidelines/wound-care.html. Accessed 30 Jun 2017 UR - http://www.debra-international.org/clinical-guidelines/complete-eb-guidelines/wound-care.html ID - ref19 ER - TY - JOUR AU - Krämer, S. M. AU - Serrano, M. C. AU - Zillmann, G. AU - Gálvez, P. AU - Araya AU - Yanine, N. PY - 2012 DA - 2012// TI - Oral health Care for Patients with epidermolysis bullosa - best clinical practice guidelines JO - Int J Paediatr Dent VL - 22 UR - https://doi.org/10.1111/j.1365-263X.2012.01247.x DO - 10.1111/j.1365-263X.2012.01247.x ID - Krämer2012 ER - TY - JOUR AU - Martinez, A. E. PY - 2010 DA - 2010// TI - Tests to monitor in patients with severe types of epidermolysis bullosa JO - Epidermolysis Bullosa Part II – Diagn Manag VL - 28 ID - Martinez2010 ER - TY - JOUR AU - Chiaverini, C. AU - Bourrat, E. AU - Mazereeuw-Hautier, J. AU - Hadj-Rabia, S. AU - Bodemer, C. AU - Lacour, J. -. P. PY - 2016 DA - 2016// TI - Épidermolyses bulleuses héréditaires : protocole national de diagnostic et de soins (PNDS) JO - Ann Dermatol Vénéréologie VL - 5203 ID - Chiaverini2016 ER - TY - JOUR AU - Oji, V. AU - Preil, M. AU - Kleinow, B. AU - Wehr, G. AU - Fischer, J. AU - Hennies, H. C. PY - 2017 DA - 2017// TI - S1 guidelines for the diagnosis and treatment of ichthyoses – update JO - JDDG J Dtsch Dermatol Ges VL - 15 ID - Oji2017 ER - TY - STD TI - Mazereeuw-Hautier J., Hernandez-Martin A., O’Toole E.A., Bygum A., Amaro C., Aldwin M., et al. Management of congenital ichthyoses: European guidelines of care: Part Two. Br J Dermatol. 2018;0 ja. doi:https://doi.org/10.1111/bjd.16882. ID - ref24 ER - TY - BOOK PY - 2016 DA - 2016// TI - R: A language and environment for statistical computing PB - R Foundation for Statistical Computing CY - Vienna ID - ref25 ER - TY - JOUR AU - Kahle, D. AU - Wickham, H. PY - 2013 DA - 2013// TI - ggmap: Spatial Visualization with ggplot2 JO - R J VL - 5 ID - Kahle2013 ER - TY - BOOK AU - Bryer, J. AU - Speerschneider, K. PY - 2016 DA - 2016// TI - likert: Analysis and Visualization Likert Items ID - Bryer2016 ER -