Orphanet Journal of Rare Diseases | Home page

Orphanet Journal of Rare Diseases | Home page

Orphanet Journal of Rare Diseases

The following new articles have just been published in Orphanet Journal of Rare Diseases POSITION STATEMENT RD-RAP: beyond rare disease patient registries, devising a comprehensive data and analytic framework Matthew I. Bellgard, Tom Snelling and James M. McGree Orphanet Journal of Rare Diseases 2019, 14:176 | Published on: 12 July 2019 Full Text | PDF RESEARCH Adherence with metreleptin therapy and health self-perception in patients with lipodystrophic syndromes Camille Vatier, Dina Kalbasi, Marie-Christine Vantyghem, Olivier Lascols, Isabelle Jéru, Anne Daguenel, Jean-François Gautier, Marion Buyse and Corinne Vigouroux Orphanet Journal of Rare Diseases 2019, 14:177 | Published on: 12 July 2019 Full Text | PDF RESEARCH Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection - quantitative survey and recommendations Sandra Courbier, Rebecca Dimond and Virginie Bros-Facer Orphanet Journal of Rare Diseases 2019, 14:175 | Published on: 12 July 2019 Full Text | PDF RESEARCH Diagnostic and clinical experience of patients with pantothenate kinase-associated neurodegeneration Randall D. Marshall, Abigail Collins, Maria L. Escolar, H. A. Jinnah, Thomas Klopstock, Michael C. Kruer, Aleksandar Videnovic, Amy Robichaux-Viehoever, Colleen Burns, Laura L. Swett, Dennis A. Revicki, Randall H. Bender and William R. Lenderking Orphanet Journal of Rare Diseases 2019, 14:174 | Published on: 12 July 2019 Full Text | PDF

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