Search Results - "rare diseases"

Severe fever and thrombocytopenia syndrome virus infection: Considerations for vaccine evaluation of a rare disease by Joel N. Maslow, Jackie J. Kwon, Susan K. Mikota, Susan Spruill, Youngran Cho, Moonsup Jeong

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281 Health-related quality of life of rare disease patients and care-givers in Hong Kong by Brian Hon Yin Chung, Yvette Nga Chung Ng, Claudia Ching Yan Chung

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A RARE DISEASE OF CONGENITAL HISTIOCYTOSIS FROM LANGERHANS CELLS IN A NEW-BORN BABY by Ольга Александровна Загородникова, Яков Яковлевич Яковлев, Елена Николаевна Гаврилова, Елена Петровна Шабашкевич, Ирина Валерьевна Осокина

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Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases by Karen Fratantoni, Jessica Livingston, Sandra E. Schellinger, Samar M. Aoun, Maureen E. Lyon

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Negotiating Medical Insurance Drug Prices: The Role in Reducing Costs of Orphan Drugs for Rare Diseases by Jinmiao Lu, Xiaohua Ying, Zhiping Li

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Intravascular histiocytosis: case report of a rare disease probably associated with silicone breast implant, by Yasmin Gama Abuawad, Ticiana de Andrade Castelo Branco Diniz, Priscila Kakizaki, Neusa Yuriko Sakai Valente

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SMART Work Design: Accelerating the Diagnosis of Rare Diseases in the Western Australian Undiagnosed Diseases Program by Georgia J. Hay, Georgia J. Hay, Florian E. Klonek, Cati S. Thomas, Alicia Bauskis, Gareth Baynam, Gareth Baynam, Gareth Baynam, Gareth Baynam, Gareth Baynam, Gareth Baynam, Sharon K. Parker

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Role of Fine Needle Aspiration in the Diagnosis of the Rare Disease of Langerhans Cell Histiocytosis in a Child by Seema Lale, Daniel Soto, Patricia G. Wasserman

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'Advocacy groups are the connectors': Experiences and contributions of rare disease patient organization leaders in advanced neurotherapeutics by Christina Q. Nguyen, Didu Kariyawasam, Kristine Alba‐Concepcion, Sarah Grattan, Kate Hetherington, Claire E. Wakefield, Susan Woolfenden, Russell C. Dale, Elizabeth E. Palmer, Michelle A. Farrar

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Analysis of affordability differences for rare diseases in China: a comparison across disease types and regions by Ye Chen, Xinyang Chen, Yi Deng, Jinxi Ding

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The Awareness of Rare Diseases Among Medical Students and Practicing Physicians in the Republic of Kazakhstan. An Exploratory Study by Dariusz Walkowiak, Kamila Bokayeva, Alua Miraleyeva, Jan Domaradzki

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Remote visualization of large-scale genomic alignments for collaborative clinical research and diagnosis of rare diseases by Alberto Corvò, Leslie Matalonga, Dylan Spalding, Alexander Senf, Steven Laurie, Daniel Picó-Amador, Marcos Fernandez-Callejo, Ida Paramonov, Anna Foix Romero, Emilio Garcia-Rios, Jorge Izquierdo Ciges, Anand Mohan, Coline Thomas, Andres Felipe Silva Valencia, Csaba Halmagyi, Mallory Ann Freeberg, Ana Töpf, Rita Horvath, Gary Saunders, Ivo Gut, Thomas Keane, Davide Piscia, Sergi Beltran

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Standardized Data Structures in Rare Diseases: CDISC User Guides for Duchenne Muscular Dystrophy and Huntington's Disease by Ariana P. Mullin, Diane Corey, Emily C. Turner, Richard Liwski, Daniel Olson, Jackson Burton, Sudhir Sivakumaran, Lynn D. Hudson, Klaus Romero, Diane T. Stephenson, Jane Larkindale

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Non-Communicable Diseases and Rare Diseases: A Current and Future Public Health Challenge within Pediatrics by Valeria Calcaterra, Gianvincenzo Zuccotti

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Patient involvement in priority-setting for medical research: A mini review of initiatives in the rare disease field by Amelia Katirai, Atsushi Kogetsu, Kazuto Kato, Beverley Yamamoto

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Impact of the COVID-19 Pandemic on People Living With Rare Diseases and Their Families: Results of a National Survey by Maurizio Macaluso, Marc E Rothenberg, Thomas Ferkol, Pierce Kuhnell, Henry J Kaminski, David W Kimberlin, Michael Benatar, Mirna Chehade

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Barriers to and Facilitators of Providing Care for Adolescents Suffering from Rare Diseases: A Mixed Systematic Review by Pelagia Tsitsani, Georgios Katsaras, Elpidoforos S. Soteriades

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Late onset 'en coup de sabre' following trauma: Rare presentation of a rare disease by Tasleem Arif, Imran Majid, Mir Laieq Ishtiyaq Haji

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Churg-Strauss Syndrome or Eosinophilic Granulomatosis with Polyangiitis: Exuberant Classic Clinical Picture of a Rare Disease by Luana Vieira Mukamal, Celso Tavares Sodré, Lara Beatriz Prata, Fernanda Nakasato, Tullia Cuzzi, Marcia Ramos-

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Occupational Characteristics of Semiconductor Workers with Cancer and Rare Diseases Registered with a Workers' Compensation Program in Korea by Dong-Uk Park, Sangjun Choi, Seunghee Lee, Dong-Hee Koh, Hyoung-Ryoul Kim, Kyong-Hui Lee, Jihoon Park

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