Rett syndrome and the role of national parent associations within a European context

Gillian Townend, Eric Smeets, Dick van Waardenburg, Rob van der Stel, Marielle van den Berg, Henk van Kranen, Leopold Curfs

Research output: Contribution to journalArticleAcademicpeer-review

Original languageEnglish
Pages (from-to)17-26
Number of pages10
JournalRare diseases and orphan drugs
Issue number2
Publication statusPublished - 2015


  • Rett syndrome
  • parent associations
  • centres of expertise
  • European Union
  • European policy
  • rare diseases
  • rare disease registries

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