Val50Met hereditary transthyretin amyloidosis: not just a medical problem, but a psychosocial burden by Juan González-Moreno, Aina Gaya-Barroso, Inés Losada-López, Adrián Rodríguez, Teresa Bosch-Rovira, Tomás Ripoll-Vera, Mercedes Usón, Antoni Figuerola, Cristina Descals, Carles Montalà, María Asunción Ferrer-Nadal, Eugenia Cisneros-Barroso

“…The survey was disseminated during the regular follow up at the outpatient clinic of the Hospital Universitario Son Llàtzer and during the meetings organized by the Andrade’s Disease patients’ advocacy group from the Balearic Islands. These meetings were attended also by subjects followed up by the Hospital Universitario Son Espases and their caregivers and relatives. …”
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Etiology, Risk Factors, and Diagnosis of Back Pain in Children and Adolescents: Evidence- and Consensus-Based Interdisciplinary Recommendations by Michael Frosch, Maximilian D. Mauritz, Stefan Bielack, Susanne Blödt, Uta Dirksen, Michael Dobe, Florian Geiger, Renate Häfner, Lea Höfel, Bettina Hübner-Möhler, Thekla von Kalle, Burkhard Lawrenz, Andreas Leutner, Frauke Mecher, Kiril Mladenov, Heike Norda, Lorin Stahlschmidt, Marc Steinborn, Ralf Stücker, Ralf Trauzeddel, Regina Trollmann, Julia Wager, Boris Zernikow

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E-Waste Management in India: Issues and Strategies by Rama Mohana R. Turaga, Kalyan Bhaskar, Satish Sinha, Daniel Hinchliffe, Morton Hemkhaus, Rachna Arora, Sandip Chatterjee, Deepali Sinha Khetriwal, Verena Radulovic, Pranshu Singhal, Hitesh Sharma

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World Heart Federation Consensus on Transthyretin Amyloidosis Cardiomyopathy (ATTR-CM) by Dulce Brito (Chair), Fabiano Castro Albrecht, Diego Perez de Arenaza, Nicole Bart, Nathan Better, Isabel Carvajal-Juarez, Isabel Conceição, Thibaud Damy, Sharmila Dorbala, Jean-Christophe Fidalgo, Pablo Garcia-Pavia, Junbo Ge, Julian D. Gillmore, Jacek Grzybowski, Laura Obici, Daniel Piñero, Claudio Rapezzi, Mitsuharu Ueda, Fausto J. Pinto

“…To accomplish these goals, the World Heart Federation assembled a panel of 18 expert clinicians specialized in TTR amyloidosis from 13 countries, along with a representative from the Amyloidosis Alliance, a patient advocacy group. This document is based on a review of published literature, expert opinions, registries data, patients’ perspectives, treatment options, and ongoing developments, as well as the progress made possible via the existence of centres of excellence. …”
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Diffusion-Weighted MRI for Predicting Pathologic Complete Response in Neoadjuvant Immunotherapy by Wen Li, Nu N. Le, Natsuko Onishi, David C. Newitt, Lisa J. Wilmes, Jessica E. Gibbs, Julia Carmona-Bozo, Jiachao Liang, Savannah C. Partridge, Elissa R. Price, Bonnie N. Joe, John Kornak, Mark Jesus M. Magbanua, Rita Nanda, Barbara LeStage, Laura J. Esserman, I-SPY Imaging Working Group, I-SPY Investigator Network, Laura J. van’t Veer, Nola M. Hylton

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Recommendations for optimal interdisciplinary management and healthcare settings for patients with rare neurological diseases by Holm Graessner, Carola Reinhard, Tobias Bäumer, Annette Baumgärtner, Knut Brockmann, Norbert Brüggemann, Eva Bültmann, Jeanette Erdmann, Kirstin Heise, Günter Höglinger, Irina Hüning, Frank J. Kaiser, Christine Klein, Thomas Klopstock, Ingeborg Krägeloh-Mann, Markus Kraemer, Kerstin Luedtke, Martin Mücke, Thomas Musacchio, Andreas Nadke, Alma Osmanovic, Gabriele Ritter, Katharina Röse, Christopher Schippers, Ludger Schöls, Rebecca Schüle, Jörg B. Schulz, Joachim Sproß, Eveline Stasch, Gilbert Wunderlich, Alexander Münchau

“…Results 38 statements were consented and grouped into 11 topics: health care structure, core neurological expertise and core mission, interdisciplinary team composition, diagnostics, continuous care and therapy development, case conferences, exchange / cooperation between Centers for Rare Diseases and other healthcare partners, patient advocacy group, databases, translation and health policy. …”
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Standardizing health outcomes for chronic kidney disease. Adaptation of the international consortium for health outcomes measurement standard set to the Spanish setting by Eduardo Parra, Mercedes Salgueira, Jose Portolés, Pablo Serrano, Beatriz Bayés, Joaquín Estévez, María Dolores del Pino

“…A second draft of the standard set was generated and evaluated by the Patient advocacy group Federación Nacional de Asociaciones para la Lucha Contra las Enfermedades del Riñón (ALCER). …”
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Standardizing health outcomes for chronic kidney disease. Adaptation of the international consortium for health outcomes measurement standard set to the Spanish setting by Eduardo Parra, Mercedes Salgueira, Jose Portolés, Pablo Serrano, Beatriz Bayés, Joaquín Estévez, María Dolores del Pino

“…A second draft of the standard set was generated and evaluated by the Patient advocacy group Federación Nacional de Asociaciones para la Lucha Contra las Enfermedades del Riñón (ALCER). …”
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3430 Promoting Stakeholder Research Competencies to Culturalize Health Science by the Miami CTSA: National Partnership for Training Community Health Workers in Patient-Centered Out... by Brendaly Rodriguez

“…Project Collaborators: Día de la Mujer Latina, a patient advocacy group in Texas with CHW trainings in several states and Puerto Rico Chula Vista Community Collaborative, a community health empowerment organization in Southern California Progresso Community Center, a Latino-focused health coalition based in Tennessee Florida Community Health Worker Coalition, a statewide partnership dedicated to the support and promotion of the CHW profession in Florida. …”
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Lobbying Practices of Citizens’ Groups in China by Emina Popović

“…As previous research indicates, some advocacy groups in China work hard to represent their members and to have their voice heard in the policy-making process. …”
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National food security, immigration reform, and the importance of worker engagement in agricultural guestworker debates by Anna Zoodsma, Mary Jo Dudley, Laura-Anne Minkoff-Zern

“…Moderate-sized farmers and regionally based worker advocacy groups tend to be the most concerned with day-to-day program operations and fair working condi­tions. …”
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Nonprofit Advocacy in the Era of Trump by Lamothe Meeyoung, Lavastida Vicki

“…Our study also explores various organizational incentives advocacy groups use to maintain support. We gather data from structured interviews of advocacy organizations in the Oklahoma City metropolitan area. …”
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Tackling Ethical Challenges of Premature Delivery of Stem Cell-Based Therapies: ISSCR 2018 Annual Meeting Focus Session Report by Jeremy Sugarman, Roger A. Barker, Ian Kerridge, Tamra Lysaght, Graziella Pellegrini, Douglas Sipp, Claire Tanner

“…Regulators, scientists, clinicians, professional societies, and patient advocacy groups need to collaboratively articulate expectations related to the proper development and delivery of stem cell-based therapies.…”
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Groups against law forcing kids to look after parents by The Star

“…Despite the recent horror of the elderly being abandoned at an old folks home in Kuala Lumpur, advocacy groups and experts are againts legislation to compel children to take care of their aged parents.…”
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Biciactivismo en Medellín. De la acción colectiva a la agenda política by Estela Lopez, Diana Salinas Arango

“…The analysis of collective action from Medellin’s cycling advocacy groups on the political agenda of the city, when seen through an Interpretativist Theoretical Perspective, is a reflection of the actual gap between the citizens and the public policy. …”
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Is Genetic Discrimination Back on the Radar? A Commentary on the Recent Court of Appeal Reference Decision on the Genetic Non- Discrimination Act (GNDA) by Yann Joly, Gratien Dalpé, Miriam Pinkesz

“…The decision was met with opposition, as advocacy groups for Canadians suffering from genetic diseases or genetic predispositions viewed the GNDA as a step in the right direction and were hopeful that it would offer protection from genetic discrimination. …”
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Global Patient Involvement in Sarcoma Care—A Collaborative Initiative of the Connective Tissue Oncology Society (CTOS) & Sarcoma Patients EuroNet (SPAEN) by Bernd Kasper, Kathrin Schuster, Roger Wilson, Sorrel Bickley, Jean-Yves Blay, Denise Reinke, Markus Wartenberg, Rick Haas

“…This leads to many varying challenges not only for sarcoma patients, but also for doctors, researchers, and caregivers. Patient advocacy groups have an important role to play in rare cancers such as sarcomas, especially in collaboration with experts and their medical societies. …”
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Mixed methods evaluation of workshops for citizen health advocates about financial conflicts of interests in healthcare by Lisa Parker, Alice Fabbri

“…In relation to industry sponsorship of advocacy groups, some participants expressed an openness to and support for accepting sponsorship, while many expressed a caution around potential downsides. …”
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Human rights groups in Malaysia: The case of the Suara Rakyat Malaysia (SUARAM) by Khoo, Y.H.

“…One significant aspect is the close link of human rights advocacy groups with the political parties that can lead to problems of credibility and transparency.…”
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Ten simple rules for running a successful women-in-STEM organization on an academic campus. by Deborah D Rupert, Alexandra C Nowlan, Oliver H Tam, Molly Gale Hammell

“…The current academic culture facing women in science, technology, engineering, and math (STEM) fields in the United States has sparked the formation of grassroots advocacy groups to empower female scientists in training. …”
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