• Bardet Biedl the The Netherlands

    Bardet-Biedl Syndroom (BBS) 

    De website is gestart door de Stichting die in juni 2017 is opgericht. De website is gemaakt door ouders voor iedereen met...

  • Family support GAND

    Helping Hands for GAND

    Supports individuals and families affected by GATAD2B-associated neurodevelopmental disorder (GAND), to increase awareness, and to work toward research and treatment...

  • Oscar the Netherlands

    June 2017 Sororya Beacher, Oscar Netherlands

    As chairman of the sickle cell organization in the Netherlands, a trained ICU nurse, and nurse tutor this has given...

  • Patient Organization for Cranio facial syndromes

    The patient organization www.laposa.nl provides information, support and advice. It is important that you receive proper care for yourself and / or your child. They...

  • Shwachman Syndrome Support Holland

    Shwachman Syndrome Support Holland represents individuals with Shwachman Diamond Syndrome in the Netherlands. As most rare conditions Shwachman Diamond Syndrome is a complex disorder. First...