Leaving no patient behind! Expert recommendation in the use of innovative technologies for diagnosing rare diseases by van Karnebeek, Clara D M, O'Donnell-Luria, Anne, Baynam, Gareth, Baudot, Anaïs, Groza, Tudor, Jans, Judith J M, Lassmann, Timo, Letinturier, Mary Catherine V, Montgomery, Stephen B, Robinson, Peter N, Sansen, Stefaan, Mehrian-Shai, Ruty, Steward, Charles, Kosaki, Kenjiro, Durao, Patricia, Sadikovic, Bekim

Get full text

Telehealth for rare disease care, research, and education across the globe: A review of the literature by the IRDiRC telehealth task force by Chen, Faye H., Hartman, Adam L., Letinturier, Mary Catherine V., Antoniadou, Victoria, Baynam, Gareth, Bloom, Lara, Crimi, Marco, Della Rocca, Maria G., Didato, Giuseppe, Houge, Sofia Douzgou, Jonker, Anneliene, Kawome, Martina, Mueller, Friederike, O'Brien, James, Puri, Ratna Dua, Ryan, Nuala, Thong, Meow-Keong, Tumienė, Birutė, Parisi, Melissa A.

Get full text

The IRDiRC Chrysalis Task Force: making rare disease research attractive to companies by Beaverson, Katherine L., Julkowska, Daria, Letinturier, Mary Catherine V., Aartsma-Rus, Annemieke, Austin, Jennifer, Bueren, Juan, Frost, Simon, Hamamura, Misako, Larkindale, Jane, LaRosa, Greg, Magenheim, Rita, Merico, Annamaria, Pasmooij, Anna Maria Gerdina, Pirard, Vinciane, Ekow Thomford, Nicholas, Wada, Michihiko, Wong-Rieger, Durhane, Hartman, Adam L.

Get full text

Global health for rare diseases through primary care by Baynam, Gareth, Hartman, Adam L, Letinturier, Mary Catherine V, Bolz-Johnson, Matt, Carrion, Prescilla, Grady, Alice Chen, Dong, Xinran, Dooms, Marc, Dreyer, Lauren, Graessner, Holm, Granados, Alicia, Groza, Tudor, Houwink, Elisa, Jamuar, Saumya Shekhar, Vasquez-Loarte, Tania, Tumiene, Biruté, Wiafe, Samuel Agyei, Bjornson-Pennell, Heidi, Groft, Stephen

Get full text