When care hurts: parents’ experiences of caring for a child with epidermolysis bullosa by Elisabeth Daae, Kristin Billaud Feragen, Terje Naerland, Charlotte von der Lippe

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‘In the dark’: parents’ lifelong commitment to supporting children with Bardet-Biedl syndrome by Jeanette Ullmann Miller, Lena Fauske, Solrun Sigurdardottir, Shahrzad Arfa, Charlotte von der Lippe

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Healthcare needs, care use and health status outcomes in adults with Bardet-Biedl syndrome: a cross-sectional study in Norway by Cecilie Fremstad Rustad, Ragnheidur Bragadottir, Hilde Nordgarden, Jeanette Ullmann Ullmann Miller, Mina Susanne Weedon-Fekjær, Shahrzad Arfa, Pamela Marika Åsten, Kristian Tveten, Charlotte von der Lippe, Solrun Sigurdardottir

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O32: ANKRD17-related neurodevelopmental syndrome (Chopra-Amiel-Gordon syndrome): Further characterization and emerging genotype-phenotype correlations by Muhammed Cagri Bayraktutan, Abigail Sveden, Raymond Belanger, Ellen Hanson, Jack Murray, Edward Yang, Jada Cameron, Elizabeth Buttermore, Dustin Gable, Kellen Winden, Celia Tam, Vikram Prakash, Laura Trujillano, Himanshu Goel, Charlotte von der Lippe, Amelle Shillington, Yvan Herenger, Britton Zuccarelli, Linda Rosetti, Kendra Engleman, Tinatin Tkemaladze, Robert Maiwald, Amaia Lasa Aranzasti, Christopher Barnett, Marco Tartaglia, Seema Lalani, Wen-Hann Tan, Jeanne Amiel, Christopher Gordon, Mustafa Sahin, Maya Chopra

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