Search Results - "Fernandez, Vivian"

Principles for interactions with biopharmaceutical companies: the development of guidelines for patient advocacy organizations in the field of rare diseases by Stein, Susan, Bogard, Elizabeth, Boice, Nicole, Fernandez, Vivian, Field, Tessa, Gilstrap, Alan, Kahn, Susan R, Larkindale, Jane, Mathieson, Toni

“…Rare diseases are a global public health concern, affecting an estimated 350 million individuals. Only 5% of approximately 7000 known rare diseases have a…”
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An online survey on burden of illness among families with post-stem cell transplant mucopolysaccharidosis type I children in the United States by Conner, Therese, Cook, Francesca, Fernandez, Vivian, Rascati, Karen, Rangel-Miller, Vanessa

“…Severe mucopolysaccharidosis type I (also known as Hurler syndrome) is a rare devasting recessive genetic disease caused by the deficiency of an enzyme…”
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COVID-19 vaccine refusal among university students in Peru by Padilla-Santos, Mariella B, Bravo-Fernández, Vivian, Grijalva-Vásquez, Fernando G, Flores-Catiri, Royleer R, Peña, Américo

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Characterizing visual function in children with late infantile neuronal ceroid lipofuscinosis type 2 (CLN2): The caregiver perspective by Phillips, Dawn, Fernandez, Vivian, Ohnsman, Christina

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Characterizing expressive language skills in children with late infantile neuronal ceroid lipofuscinosis type 2 (CLN2): The caregiver perspective by Phillips, Dawn, Fernandez, Vivian, Nevoret, Marie-Laure

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Caregiver perspectives on their MPS II journey by Fernandez, Vivian, VanHoutan, Jennifer, Price, Amy, Kuchaculla, Pritha, Mercer, Rachael, Prakash, Rashmika

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Family survey results of 7 children with atypical neuronal ceroid lipofuscinosis type 2 (CLN2) disease in the United States by Rastogi, Sarang, Conner, Therese, Cook, Francesca, Fernandez, Vivian, Kirby, Tracy

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Results of a family survey on healthcare resource needs in children with neuronal ceroid lipofuscinosis type 2 (CLN2) disease in the US and Canada by Rastogi, Sarang, Conner, Therese, Cook, Francesca, Fernandez, Vivian, Kirby, Tracy

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Lived Experience of Patients & Caregivers in Rare Genetic Neurological Gene Therapy Clinical Trials in Children by Bateman-House, Alison, Cowley, Kirsten, Fernandez, Vivian, Gilmor, Michelle, Hunt, Cara, Nevoret, Marie-Laure, Ward, Erin, Shah, Lesha D., Smith, Jared B.

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Results of a Canadian survey on the family burden of illness in severe mucopolysaccharidosis type I by Conner, Therese, Cook, Francesca, Fernandez, Vivian, Angel, Kim

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Results of an online survey on family burden of illness in severe mucopolysaccharidosis type II by Conner, Therese, Cook, Francesca, Fernandez, Vivian, Rangel-Miller, Vanessa

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An online survey of burden of illness in families with mucopolysaccharidosis type II children in the United States by Conner, Therese, Cook, Francesca, Fernandez, Vivian, Rangel-Miller, Vanessa

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Project-Based Learning to Develop Intercultural Communicative Competence in Virtual Exchange Contexts by Peraza, Ana Vivian Fernández, Furumura, Yumiko

“…Higher education requires a different approach to teaching and learning since modern-day students no longer have the same learning needs as they had in the…”
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Healthcare resource use in severe mucopolysaccharidosis type I post-transplant children via parent survey by Conner, Therese, Cook, Francesca, Fernandez, Vivian, Rangel-Miller, Vanessa, Rascati, Karen

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SCALING UP β-FRUCTOSIDASE PRODUCTION BY PICHIA PASTORIS BfrA4X ON A COST-EFFECTIVE CANE MOLASSES MEDIUM by Ortega Cambara, Julio Cesar, León Fernández, Vivian, Martínez García, Duniesky, Sobrino Legón, Alina, Dopico Ramírez, Daisy, Pérez Cruz, Enrique Rosendo

“…ABSTRACT Introduction: Molasses is an agro-industrial by-product that could be used as inexpensive carbon source to reduce the culture media cost for…”
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Self-control guide adapted to the characteristics of non-agricultural cooperatives by Vivian Fernández Cruz, Yanelis Ortuzar Hernández, María de Jesús Ribet Cuadot, Nigdalys Figueroa Sierra

“…In the control actions carried out in non-agricultural cooperatives in the province of Pinar del Río during the IX and XI National Internal Control…”
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A phase II, randomized, double‐blind, placebo‐controlled, dose‐ranging study of belimumab in patients with active systemic lupus erythematosus by Wallace, Daniel J., Stohl, William, Furie, Richard A., Lisse, Jeffrey R., McKay, James D., Merrill, Joan T., Petri, Michelle A., Ginzler, Ellen M., Chatham, W. Winn, McCune, W. Joseph, Fernandez, Vivian, Chevrier, Marc R., Zhong, Z. John, Freimuth, William W.

“…Objective To assess the safety, tolerability, biologic activity, and efficacy of belimumab in combination with standard of care therapy (SOC) in patients with…”
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Improved Biodiesel Production Yield Using Coconut Mesocarp-Based Catalyst by José Armando Espinoza-Montero, Karina María Rodríguez-Mora, Eddy Gabriel Jirón-García, Pedro Casanova-Treto, Ana Vivian Fernández-Peraza

“…Current concern over the decrease in the use of fossil fuels has led to the study of various options as an alternative to replace them in the transportation…”
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Clinician Perspectives of Gene Therapy as a Treatment Option for Duchenne Muscular Dystrophy by Cope, Heidi, Fischer, Ryan, Heslop, Emma, McNiff, Megan, Johnson, Alexandra, Camino, Eric, Denger, Brian, Armstrong, Niki, Thakrar, Sejal, Bateman-House, Alison, Beaverson, Katherine L, Woollacott, Ione O C, Phillips, Dawn, Fernandez, Vivian, Ganot, Annie, Donisa-Dreghici, Roxana, Mansfield, Carol, Peay, Holly

“…Duchenne muscular dystrophy (DMD) is a progressive, life-limiting, neuromuscular disorder. Clinicians play an important role in informing families about…”
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Q-Tip: Resident-Driven Quality Improvement to Inpatient Medication Reconciliation in an Academic Setting by Sedgh, Sepideh, Kantrowitz, Michael, Shamah, Steven, Agarwal, Arpit, Fernandez, Vivian, Cohen, David

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