نتائج البحث

The association of body image with quality of life, psychological assistance and social support in neurofibromatosis type 1 patients: a cross-sectional study.

• Authors : Muñoz, Daniel^1,2,3 (AUTHOR); Jodar, Mercè^1,4,5 (AUTHOR); Valls, Laia^2,3 (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 6/6/2025, Vol. 20 Issue 1, p1-12. 12p.

تفاصيل العنوان

A lack of race and ethnicity data in the treatment of hereditary hemorrhagic telangiectasia: a systematic review of intravenous bevacizumab efficacy.

• Authors : Galiatsatos, Panagis^1,2,3,4 (AUTHOR) ; Wilson, Cheri³ (AUTHOR); O'Brien, Jaime⁵ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 6/13/2022, Vol. 17 Issue 1, p1-6. 6p.

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Epidemiology of rare diseases in Brazil: protocol of the Brazilian Rare Diseases Network (RARAS-BRDN).

• Authors : Félix, Têmis Maria¹ (AUTHOR) ; de Oliveira, Bibiana Mello^1,2 (AUTHOR); Artifon, Milena¹ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 2/24/2022, Vol. 17 Issue 1, p1-13. 13p.

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Quality of life of transplanted children and their parents: a cross-sectional study.

• Authors : Duvant, Pauline¹ (AUTHOR); Fillat, Magali¹ (AUTHOR); Garaix, Florentine¹ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 8/17/2021, Vol. 16 Issue 1, p1-14. 14p.

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Ten years of specialized adult care for phenylketonuria - a single-centre experience.

• Authors : Mütze, Ulrike^1,2,3; Thiele, Alena Gerlinde¹ ; Baerwald, Christoph⁴

• Source: Orphanet Journal of Rare Diseases. 3/24/2016, Vol. 11, p1-8. 8p.

تفاصيل العنوان

Characteristics of patients contacting a center for undiagnosed and rare diseases.

• Authors : Mueller, Tobias¹ ; Jerrentrup, Andreas¹; Bauer, Max Jakob¹

• Source: Orphanet Journal of Rare Diseases. 6/21/2016, Vol. 11, p1-9. 9p.

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Quality of life in patients with locked-in syndrome: Evolution over a 6-year period.

• Authors : Rousseau, Marie-Christine^1,2 ; Baumstarck, Karine^2,3; Alessandrini, Marine²

• Source: Orphanet Journal of Rare Diseases. Jul2015, Vol. 10 Issue 1, p1-8. 8p.

تفاصيل العنوان

Quality of life of transplanted children and their parents: a cross-sectional study

• Authors : Alexandre Fabre; Pascal Auquier; Caroline Ovaert

Subjects: Quality of life; Parents; Adolescent

• Source: Orphanet J Rare DisOrphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-14 (2021)

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