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Challenges and opportunities for the use of telehealth in rare disease diagnosis, treatment, research, and education: key opinion leader interviews by the IRDiRC telehealth task force Parisi, Melissa A.; Hartman, Adam L.; Letinturier, Mary Catherine V.; Tataru, Elena-Alexandra; Antoniadou, Victoria; Baynam, Gareth; Bloom, Lara; Crimi, Marco; Della Rocca, Maria G.; Didato, Giuseppe; Douzgou Houge, Sofia; Jonker, Anneliene H.; Kawome, Martina; Mueller, Friederike; O'Brien, James; Dua Puri, Ratna; Ryan, Nuala; Thong, Meow-Keong; Tumiene, Birute; Chen, Faye H. Share Save
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The state-of-the-art of N-of-1 therapies and the IRDiRC N-of-1 development roadmap Jonker, Anneliene H.; Tataru, Elena-Alexandra; Graessner, Holm; Dimmock, David; Jaffe, Adam; Baynam, Gareth; Davies, James; Mitkus, Shruti; Iliach, Oxana; Horgan, Rich; Augustine, Erika F.; Bateman-House, Alison; Pasmooij, Anna Maria Gerdina; Yu, Tim; Synofzik, Matthis; Douville, Julie; Lapteva, Larissa; Brooks, Philip John; O'Connor, Daniel; Aartsma-Rus, Annemieke Share Save
Drug repurposing for rare: progress and opportunities for the rare disease community Jonker, Anneliene Hechtelt; O'Connor, Daniel; Cavaller-Bellaubi, Maria; Fetro, Christine; Gogou, Maria; Hoen, Peter A. C. T.; de Kort, Martin; Stone, Heather; Valentine, Nivedita; Pasmooij, Anna Maria Gerdina Share Save
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Research on rare diseases: ten years of progress and challenges at IRDiRC Monaco, Lucia; Zanello, Galliano; Baynam, Gareth; Jonker, Anneliene H.; Julkowska, Daria; Hartman, Adam L.; O'Connor, Daniel; Wang, Chiuhui Mary; Wong-Rieger, Durhane; Pearce, David A. Share Save
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The use or generation of biomedical data and existing medicines to discover and establish new treatments for patients with rare diseases - recommendations of the IRDiRC Data Mining and Repurposing Task Force Southall, Noel T.; Natarajan, Madhusudan; Lau, Lilian Pek Lian; Jonker, Anneliene Hechtelt; Deprez, Benoit; Guilliams, Tim; Hunter, Lawrence; Rademaker, Carin M. A.; Hivert, Virginie; Ardigo, Diego; Cavalla, David; Colvis, Christine; Hettne, Kristina; t'Hoen, Peter-Bram; Kant, Caroline; Krischer, Jeffrey; Marin, Frederic; Quintana, Jordi; Rademaker, Carin; Reed, Jane; Southali, Noei; Tsigkos, Stylianos; Thompson, Rick Share Save
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Model consent clauses for rare disease research Minh Thu Nguyen; Goldblatt, Jack; Isasi, Rosario; Jagut, Marlene; Jonker, Anneliene Hechtelt; Kautmann, Petra; Ouillade, Laetitia; Molnar-Gabor, Fruszina; Shabani, Mahsa; Sid, Eric; Tasse, Anne Marie; Wong-Rieger, Durhane; Knoppers, Bartha Maria; Kaufmann, Petra; Knoppers, Bartha; Tasse, Anne-Marie Share Save
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The International Rare Diseases Research Consortium: Policies and Guidelines to maximize impact Lochmueller, Hanns; Torrent i Farnell, Josep; Le Cam, Yann; Jonker, Anneliene H.; Lau, Lilian P. L.; Baynam, Gareth; Kaufmann, Petra; Dawkins, Hugh J. S.; Lasko, Paul; Austin, Christopher P.; Boycott, Kym M. Share Save
Progress in Rare Diseases Research 2010-2016: An IRDiRC Perspective Dawkins, Hugh J. S.; Draghia-Akli, Ruxandra; Lasko, Paul; Lau, Lilian P. L.; Jonker, Anneliene H.; Cutillo, Christine M.; Rath, Ana; Boycott, Kym M.; Baynam, Gareth; Lochmuller, Hanns; Kaufmann, Petra; Le Cam, Yann; Hivert, Virginie; Austin, Christopher P. Share Save
Future of Rare Diseases Research 2017-2027: An IRDiRC Perspective Austin, Christopher P.; Cutillo, Christine M.; Lau, Lilian P. L.; Jonker, Anneliene H.; Rath, Ana; Julkowska, Daria; Thomson, David; Terry, Sharon F.; de Montleau, Beatrice; Ardigo, Diego; Hivert, Virginie; Boycott, Kym M.; Baynam, Gareth; Kaufmann, Petra; Taruscio, Domenica; Lochmuller, Hanns; Suematsu, Makoto; Incerti, Carlo; Draghia-Akli, Ruxandra; Norstedt, Irene; Wang, Lu; Dawkins, Hugh J. S. Share Save
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