Burden of illness in Rett syndrome: initial evaluation of a disorder-specific caregiver survey door Walter E. Kaufmann, Alan K. Percy, Jeffrey L. Neul, Jenny Downs, Helen Leonard, Paige Nues, Girish D. Sharma, Theresa E. Bartolotta, Gillian S. Townend, Leopold M. G. Curfs, Orietta Mariotti, Claude Buda, Heather M. O’Leary, Lindsay M. Oberman, Vanessa Vogel-Farley, Katherine V. Barnes, Christopher U. Missling

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International workshop: what is needed to ensure outcome measures for Rett syndrome are fit-for-purpose for clinical trials? June 7, 2023, Nashville, USA door Jenny Downs, Dominique C. Pichard, Walter E. Kaufmann, Joseph P. Horrigan, Melissa Raspa, Gillian Townend, Eric D. Marsh, Helen Leonard, Kathleen Motil, Andrew C. Dietz, Nupur Garg, Amitha Ananth, Breanne Byiers, Sarika Peters, Christopher Beatty, Frank Symons, Aleksandra Jacobs, James Youakim, Bernhard Suter, Paramola Santosh, Jeffrey L. Neul, Tim A. Benke

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