المؤلفون: Glad, Danielle M.¹ (AUTHOR) dmglad@uwm.edu, Pardej, Sara K.¹ (AUTHOR), Olszewski, Ellen¹ (AUTHOR), Klein-Tasman, Bonita P.¹ (AUTHOR)

المصدر: Orphanet Journal of Rare Diseases. 3/12/2024, Vol. 19 Issue 1, p1-13. 13p.

مصطلحات موضوعية: *NEUROFIBROMATOSIS 1, *CAREGIVERS, *TEENAGERS, *TELEMEDICINE, *SOCIAL skills, *PEERS

المؤلفون: Cieza Rivera, Ana M.¹ (AUTHOR), Lobato Fuertes, Carlos² (AUTHOR), Fernández-Villa, Tania^1,3,4 (AUTHOR), Martín Sánchez, Vicente^1,3,4 (AUTHOR), Atallah, Isis^1,5 (AUTHOR) maria-isis.atallah-gonzalez@chuv.ch

المصدر: Orphanet Journal of Rare Diseases. 2/24/2024, Vol. 19 Issue 1, p1-9. 9p.

مصطلحات موضوعية: *NEUROFIBROMATOSIS 1, *ITCHING, *QUALITY of life, *PSYCHOLOGICAL well-being, *WOMEN patients, *BENIGN tumors, *DROWSINESS

مصطلحات جغرافية: SPAIN

المؤلفون: Lee, Tin-Suet Joan¹ (AUTHOR), Chopra, Meera¹ (AUTHOR), Kim, Raymond H^2,3 (AUTHOR), Parkin, Patricia C.^4,5 (AUTHOR), Barnett-Tapia, Carolina^1,2,3,4 (AUTHOR) c.barnetttapia@utoronto.ca

المصدر: Orphanet Journal of Rare Diseases. 9/14/2023, Vol. 18 Issue 1, p1-8. 8p.

مصطلحات موضوعية: *NEUROFIBROMATOSIS 2, *NEUROFIBROMATOSIS 1, *RANDOM effects model, *MEDICAL records, *HEALTH services accessibility, *MEDICAL screening

المؤلفون: Rivera, Ana M. Cieza¹ (AUTHOR), Fernández-Villa, Tania^1,2,3 (AUTHOR), Martín, Vicente^1,2,3 (AUTHOR), Atallah, Isis^1,4 (AUTHOR) maria-isis.atallah-gonzalez@chuv.ch

المصدر: Orphanet Journal of Rare Diseases. 6/23/2023, Vol. 18 Issue 1, p1-7. 7p.

مصطلحات موضوعية: *SYSTOLIC blood pressure, *NEUROFIBROMATOSIS 1, *BLOOD pressure, *CIRCADIAN rhythms, *AMBULATORY blood pressure monitoring, *DIASTOLIC blood pressure

المؤلفون: Jahanshahi, Reza¹ (AUTHOR), Yasaghi, Zahra² (AUTHOR), Mirzaei, Fatemeh³ (AUTHOR), Ghasemi, Shohreh⁴ (AUTHOR), Sanagoo, Akram⁵ (AUTHOR) sanagoo@goums.ac.ir, Jouybari, Leila⁵ (AUTHOR), Foji, Samira⁶ (AUTHOR)

المصدر: Orphanet Journal of Rare Diseases. 6/23/2023, Vol. 18 Issue 1, p1-6. 6p.

مصطلحات موضوعية: *NEUROFIBROMATOSIS 1, *PSYCHOMETRICS, *NEUROFIBROMATOSIS, *CRONBACH'S alpha, *TEST validity, *FACTOR analysis, *EXPLORATORY factor analysis

المؤلفون: Ana M. Cieza Rivera, Carlos Lobato Fuertes, Tania Fernández-Villa, Vicente Martín Sánchez, Isis Atallah

المصدر: Orphanet Journal of Rare Diseases, Vol 19, Iss 1, Pp 1-9 (2024)

مصطلحات موضوعية: Quality of life, Skindex-29, Neurofibromatosis 1, Emotion, Symptoms, Functioning, Medicine

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/1750-1172Test

الوصول الحر: https://doaj.org/article/5178e9aaddc74b87b058feb9b4967053Test

المؤلفون: Line Kenborg, Line E. Frederiksen, Michael Galanakis, Karoline Doser, Thomas T. Nielsen, Mia Aagaard Doherty, Hanne Hove, John R. Østergaard, Mette M. Handrup, Cecilie Ejerskov, John J. Mulvihill, Jeanette F. Winther

المصدر: Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-11 (2023)

مصطلحات موضوعية: Neurofibromatosis 1, Population-based, Cohort study, Employment status, Denmark, Medicine

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/1750-1172Test

الوصول الحر: https://doaj.org/article/622f791977e24adba434eacaebd11aa6Test

المؤلفون: Tin-Suet Joan Lee, Meera Chopra, Raymond H Kim, Patricia C. Parkin, Carolina Barnett-Tapia

المصدر: Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-8 (2023)

مصطلحات موضوعية: Neurofibromatosis 1, Neurofibromatosis 2, Incidence rate, Prevalence rate, Medicine

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/1750-1172Test

الوصول الحر: https://doaj.org/article/ab09340bb3514e8c8e0470a656ab4c6bTest

المؤلفون: Wang, Su¹ (AUTHOR), Friedman, Jan M.¹ (AUTHOR) jan.friedman@ubc.ca, Suppa, Per² (AUTHOR), Buchert, Ralph³ (AUTHOR), Mautner, Victor-Felix⁴ (AUTHOR)

المصدر: Orphanet Journal of Rare Diseases. 3/5/2022, Vol. 17 Issue 1, p1-11. 11p.

مصطلحات موضوعية: *NEUROFIBROMATOSIS 1, *NEUROFIBROMATOSIS 2, *CORPUS callosum, *MAGNETIC resonance imaging, *PERIPHERAL nervous system, *WHITE matter (Nerve tissue), *MYELIN proteins

المؤلفون: Thota, Eshwar^1,2 (AUTHOR), Veeravalli, John Jims^1,2 (AUTHOR), Manchala, Sai Krishna¹ (AUTHOR), Lakkepuram, Bhargavi Priya¹ (AUTHOR), Kodapaneni, Jayasurya¹ (AUTHOR), Chen, Yi-Wen^3,4 (AUTHOR) yiwenchen@ntu.edu.tw, Wang, Li-Tzu⁵ (AUTHOR) lizwang@ntu.edu.tw, Ma, Kevin Sheng-Kai^3,4,6,7 (AUTHOR) kevinskma@hep1.phys.ntu.edu.tw

المصدر: Orphanet Journal of Rare Diseases. 3/2/2022, Vol. 17 Issue 1, p1-10. 10p.

مصطلحات موضوعية: *ORAL manifestations of general diseases, *NEUROFIBROMATOSIS 1, *CASE-control method, *SALIVARY glands, *DENTAL caries, *DIGESTIVE enzymes, *AMYLASES