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Information Booklets/Leaflets for patients

  • ​​​​​​​​​​​​​​​​​​​​​​​Asociación Española Síndrome CDG
  • Jimmy and metabolic disease (NL)

    Jimmy’s stofwisselimgsziekte

  • Type 3 Gaucher Disease booklet

    Welcome to the Gauchers Association information booklet on type 3 Gaucher disease.
    2016. The Gauchers Association undertook a survey amongst their members to understand. what information they would like to see in an information booklet.
    Following on from the analysis of this survey the information in this booklet, along with
    additional inserts is to help you understand type 3 Gaucher disease, such as, how is it
    inherited, how will it affect your life and its clinical management.
    We hope (...)

  • Aidez à Vaincre les Maladies Lysosomales

    DEPUIS 1990,
    L’ASSOCIATION VML FINANCE ACTIVEMENT LA RECHERCHE MÉDICALE
    ET SOUTIENT TOUS LES MALADES DANS LEUR COMBAT QUOTIDIEN.
    ENSEMBLE, CONTINUONS À CONJUGUER NOTRE SLOGAN

  • HOMOCYSTENURIA Infographic

    HCU Infographic
    The homocystinuria infographic provides an overview of homocystinuria, diagnosis, symptoms and treatment. You can download a copy of the infographic.

  • HCU Disease Checklist – Homocystinuria: A treatable disorder

    The HCU Disease Checklist provides a comprehensive list of the key warning signs and symptoms of classical homocystinuria. Download the checklist to assess whether your child has any of the signs and symptoms commonly associated with the disorder.
    Speak with your doctor about your child’s symptoms and take the HCU Disease Checklist along to your next appointment.
    Download (...)

  • Classical Homocystinuria for adults, parents and carers

    Classical Homocystinuria for adults, parents and carers
    The European Network and Registry for Homocystinurias and Methylation Defects has prepared two an information booklet on homocystinurias and related diseases for adults, parents and carers. Click on the link to download.

  • Classical Homocystinuria for children

    Classical Homocystinuria for children
    The European Network and Registry for Homocystinurias and Methylation Defects has prepared an information booklet on homocystinurias and related diseases for children of school age. Click on the link to download.

  • Classical Homocystinuria

    A Handbook
    Prof. Ida Vanessa D. Schwartz and Matheus Wilke from the Medical Genetics Service of Hospital de Clinicas de Porto Alegre, Brazil have prepared an information booklet on Classical Homocystinuria. It is available in English, Spanish and Portuguese.
    Hello! My name is Henry. I have Classical Homocystinuria.....
    A handbook in english
    A handbook in Portuguese
    A handbook in (...)

  • 31st E.S.PKU Conference 2017

    Video
    Conference Program

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