Consequences of rare diagnoses for education and daily life: development of an observation instrument (2022)
Jaeger, G., Röjvik, A., Hjelmquist, E. et al. Consequences of rare diagnoses for education and daily life: development of an observation instrument. Orphanet J Rare Dis 17, 165 (2022). https://doi.org/10.1186/s13023-022-02303-y
Issues of COVID-19 related distance learning for children neuronopathic mucopolysaccharidoses (2021)
Julie B. Eisengart, Amy N. Esler, N. Mathew Ellinwood, Rebekah L. Hudock, Kelly E. King, Terri L. Klein, Chimei Lee, Jonathan Morton, Kim Stephens, Richard Ziegler, Cara O'Neill, Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses, Molecular Genetics and Metabolism, Volume 134, Issues 1–2, 2021, Pages 68-76, ISSN 1096-7192, https://doi.org/10.1016/j.ymgme.2021.06.012.
Paz-Lourido, B., Negre, F., de la Iglesia, B. et al. Influence of schooling on the health-related quality of life of children with rare diseases. Health Qual Life Outcomes 18, 109 (2020). https://doi.org/10.1186/s12955-020-01351-x
Brayne, Carol & Ince, Paul & Keage, Hannah & Mckeith, Ian & Matthews, Fiona & Polvikoski, Tuomo & Sulkava, Raimo. (2010). Education, the brain and dementia: neuroprotection or compensation?: EClipSE Collaborative Members. Brain : a journal of neurology. 133. 2210-6. 10.1093/brain/awq185.
Contact for parents, caregivers or medical professionals
If you have or are a following a child diagnosed with neurological diseases or a global development delay, in particular learning delays, please contact us to discuss whether and how we can support you.