نتائج البحث

Current state of rare disease registries and databases in Australia: a scoping review.

• Authors : Ruseckaite, Rasa¹ (AUTHOR) ; Mudunna, Chethana¹ (AUTHOR); Caruso, Marisa¹ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 7/27/2023, Vol. 18 Issue 1, p1-25. 25p.

تفاصيل العنوان

Rare Disease Focused Antenatal Education and Diagnosis Support: Two Case Studies of Epidermolysis Bullosa Simplex.

• Authors : Saad R; National Epidermolysis Bullosa Dressing Scheme. Program funded by the Federal Department of Health and Aged Care, and administered by Independence Australia, Melbourne, Australia. .; Department of Dermatology, Sydney Children's Hospital, Randwick, NSW, Australia. .

Subjects: Epidermolysis Bullosa Simplex*/Epidermolysis Bullosa Simplex*/Epidermolysis Bullosa Simplex*/diagnosis ; Epidermolysis Bullosa Simplex*/Epidermolysis Bullosa Simplex*/Epidermolysis Bullosa Simplex*/genetics ; Epidermolysis Bullosa Simplex*/Epidermolysis Bullosa Simplex*/Epidermolysis Bullosa Simplex*/pathology

• Source: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2024 Oct 11; Vol. 19 (1), pp. 377. Date of Electronic Publication:Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172

تفاصيل العنوان

Informing a national rare disease registry strategy in Australia: a mixed methods study.

• Authors : Ruseckaite R; Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia. .; School of Public Health and Preventive Medicine, Monash University, Victoria, 3004, Australia. .

Subjects: Rare Diseases*/Rare Diseases*/Rare Diseases*/epidemiology ; Rare Diseases*/Rare Diseases*/Rare Diseases*/therapy; Humans

• Source: BMC health services research [BMC Health Serv Res] 2023 Oct 31; Vol. 23 (1), pp. 1187. Date of Electronic Publication: 2023 Oct 31.Publisher: BioMed Central Country of Publication: England NLM ID: 101088677 Publication Model: Electronic Cited Medium: Internet ISSN: 1472-6963

تفاصيل العنوان

The supportive care needs of parents with a child with a rare disease: results of an online survey.

• Authors : Pelentsov, Lemuel J.¹ ; Fielder, Andrea L.²; Laws, Thomas A.³

• Source: BMC Family Practice. 7/21/2016, Vol. 17, p1-13. 13p. 3 Charts, 3 Graphs.

تفاصيل العنوان

Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support.

• Authors : Anderson, Matilda^1,2; Elliott, Elizabeth J.^1,2,3; Zurynski, Yvonne A.^1,2

• Source: Orphanet Journal of Rare Diseases. 2013, Vol. 8 Issue 1, p1-9. 9p. 5 Charts, 1 Graph.

تفاصيل العنوان

The involvement of patient organisations in rare disease research: a mixed methods study in Australia.

• Authors : Pinto D; Centre for Health Equity, School of Population and Global Health, The University of Melbourne, Victoria, 3010, Australia. .; Martin D

Subjects: Patient Advocacy* ; Rare Diseases*; Australia

• Source: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2016 Jan 12; Vol. 11, pp. 2. Date of Electronic Publication: Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172

تفاصيل العنوان

Rare diseases: New approaches to diagnosis and care.

• Authors : PALMER, ELIZABETH EMMA^1,2; MILLIS, NICOLE³; FARRAR, MICHELLE⁴

• Source: Medicine Today. Jan/Feb2023, Vol. 24 Issue 1/2, p69-75. 7p.

تفاصيل العنوان

Zoonotic transmission of diphtheria toxin‐producing Corynebacterium ulcerans.

• Authors : Hillan, Adeline¹ (AUTHOR); Gibbs, Tristan^2,3 (AUTHOR); Weaire‐Buchanan, Graham² (AUTHOR)

Subjects: *DIPHTHERIA; *CORYNEBACTERIUM; *COMMUNICABLE diseasesAUSTRALIA

• Source: Zoonoses & Public Health. Mar2024, Vol. 71 Issue 2, p157-169. 13p.

تفاصيل العنوان

A Machine-Learning-Based Bibliometric Analysis of the Scientific Literature on Anal Cancer.

• Authors : Franco, Pierfrancesco^1,2 (AUTHOR) ; Segelov, Eva^3,4 (AUTHOR) ; Johnsson, Anders⁵ (AUTHOR)

• Source: Cancers. Apr2022, Vol. 14 Issue 7, p1697. 12p.

تفاصيل العنوان

Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays.

• Authors : Zurynski, Yvonne^1,2 ; Deverell, Marie^1,2; Dalkeith, Troy^1,3

• Source: Orphanet Journal of Rare Diseases. 4/11/2017, Vol. 12, p1-9. 9p.

تفاصيل العنوان