Search Results

Exploration of treatment in childhood Langerhans cell histiocytosis based on inflammatory and malignant symptoms: a pilot study.

• Authors : Lin, Hui-ling¹ (AUTHOR); Zheng, Qing-qing¹ (AUTHOR); Huang, Ru-lin¹ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 4/23/2024, Vol. 19 Issue 1, p1-9. 9p.

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Development of the Fabry Disease Patient-Reported Outcome (FD-PRO): a new instrument to measure the symptoms and impacts of Fabry Disease.

• Authors : Hamed, Alaa¹ (AUTHOR); DasMahapatra, Pronabesh¹ (AUTHOR); Lyn, Nicole¹ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 6/25/2021, Vol. 16 Issue 1, p1-12. 12p.

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Depressive symptoms in Fabry disease: the importance of coping, subjective health perception and pain.

• Authors : Körver, Simon¹ (AUTHOR); Geurtsen, Gert J.² (AUTHOR); Hollak, Carla E. M.¹ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 1/28/2020, Vol. 15 Issue 1, p1-9. 9p.

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Fabry App: the value of a portable technology in recording day-to-day patient monitored information in patients with Fabry disease.

• Authors : D'Amore, Simona; Mckie, Mark; Fahey, Andrew

Subjects: ANGIOKERATOMA corporis diffusum; MEDICAL personnel; PATIENT monitoring

• Source: Orphanet Journal of Rare Diseases; 1/11/2024, Vol. 19 Issue 1, p1-10, 10p

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Correlation between GLA variants and alpha-Galactosidase A profile in dried blood spot: an observational study in Brazilian patients.

• Authors : Varela, Patrícia¹ (AUTHOR); Mastroianni Kirsztajn, Gianna² (AUTHOR); Motta, Fabiana L.¹ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 1/29/2020, Vol. 15 Issue 1, p1-12. 12p.

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English version of the self-administered Fabry Pain Questionnaire for adult patients.

• Authors : Jovanovic, Ana¹ (AUTHOR); Klassen, Philipp^2,3,4 (AUTHOR); Heuschmann, Peter^2,3,4 (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 10/20/2020, Vol. 15 Issue 1, p1-6. 6p.

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Patient-reported experience with Fabry disease and its management in the real-world setting: results from a double-blind, cross-sectional survey of 280 respondents.

• Authors : Berry, Lisa¹ (AUTHOR); Walter, Jerry² (AUTHOR); Johnson, Jack³ (AUTHOR)

• Source: Orphanet Journal of Rare Diseases. 4/11/2024, Vol. 19 Issue 1, p1-12. 12p.

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Birt-Hogg-Dubé syndrome encountered at rare lung disease clinic in Anhui province, China.

• Authors : Zhang, Guofeng; Liu, Jinli; Wang, Yushuo

Subjects: SKIN diseases; PROTEINS; LUNG diseases

• Source: Orphanet Journal of Rare Diseases; 5/16/2022, Vol. 17 Issue 1, p1-9, 9p

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Expert opinion on the recognition, diagnosis and management of children and adults with Fabry disease: a multidisciplinary Turkey perspective.

• Authors : Ezgu, Fatih; Alpsoy, Erkan; Bicik Bahcebasi, Zerrin

Subjects: ANGIOKERATOMA corporis diffusum; CHILD patients; MEDICAL personnelTURKEY

• Source: Orphanet Journal of Rare Diseases; 3/2/2022, Vol. 17 Issue 1, p1-27, 27p

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Multidisciplinary approach to screening and management of children with Fabry disease: practice at a Tertiary Children's Hospital in China.

• Authors : Shen, Qian; Liu, Jialu; Chen, Jing

Subjects: CHILDREN'S hospitals; ANGIOKERATOMA corporis diffusum; JUVENILE diseasesCHINAFUDAN University (Shanghai, China)

• Source: Orphanet Journal of Rare Diseases; 12/14/2021, Vol. 16 Issue 1, p1-9, 9p

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