Rare. The importance of research, analysis, reporting and education in 'solving' the genetic epilepsies: A perspective from the European patient advocacy group for EpiCARE
Eur J Med Genet. 2023 Mar;66(3):104680.
doi: 10.1016/j.ejmg.2022.104680.
Epub 2023 Jan 6.
1 European Patient Advocacy Group (ePAG) EpiCARE, France; Hope for Hypothalamic Hamartomas and Hope for Hypothalamic Hamartomas-UK, UK. Electronic address: [email protected].
2 Alternating Hemiplegia of Childhood UK (AHCUK) and Alternating Hemiplegia of Childhood Federation of Europe (AHCFE), UK.
3 European Patient Advocacy Group (ePAG) EpiCARE, France; Dravet Italia Onlus; Epilepsy Research Centre, Department of Medicine, The University of Melbourne, Austin Health, Heidelberg, Victoria, 3084, Australia.
4 Epilepsy Research Centre, Department of Medicine, The University of Melbourne, Austin Health, Heidelberg, Victoria, 3084, Australia; Murdoch Children's Research Institute, The Royal Children's Hospital, Parkville, Victoria, 3052, Australia.
5 European Patient Advocacy Group (ePAG) EpiCARE, France; Associazione Italiana GLUT1 Onlus, Italy.
6 European Patient Advocacy Group (ePAG) EpiCARE, France; International Alternating Hemiplegia of Childhood Research Consortium (IAHCRC), USA; Alternating Hemiplegia of Childhood 18+ (AHC18+ e.V.) Association, Germany.
7 European Patient Advocacy Group (ePAG) EpiCARE, France; Ring20 Research and Support UK, UK.
8 Dravet Italia Onlus; Research Center for Pediatric Epilepsies Verona, Department of Surgical Sciences, Dentistry, Gynecology and Pediatrics, University of Verona, Italy.
9 Hope for Hypothalamic Hamartomas and Hope for Hypothalamic Hamartomas-UK, UK; Epilepsy Research Centre, Department of Medicine, The University of Melbourne, Austin Health, Heidelberg, Victoria, 3084, Australia; Murdoch Children's Research Institute, The Royal Children's Hospital, Parkville, Victoria, 3052, Australia.