Informing families

Information, help and advice for professionals informing families of a diagnosis of Down syndrome

In this section you will find information on how to access best practice guidelines for communicating with families and details about training that Down Syndrome Ireland offers medical professionals.

  • Training

    The way in which parents are first told that their son or daughter has a disability can stay with them for the rest of their lives.  We recognise that this can be a difficult task for medical professionals and it is one that they can struggle with.

    Down Syndrome Ireland offers training, advice and support to medical professionals in how to deliver news in an appropriate manner

    The training is carried out by our Clinical Research Nurse Fiona McGrane. She is the only nurse in Ireland who specialises in Down syndrome.

    Fiona currently provides this training to all Trinity College medical graduates on their paediatric rotation and to student midwives.

    Please contact us on 01 4266500 or email if you would like more information or would like to schedule a training session.

  • …more than medical

    While there is an abundance of medical information about Down syndrome, there is not a lot which provides real insight into the realities of having a child with Down syndrome.

    Our “… more than medical” booklet challenges outdated ideas about Down syndrome and instead provides an insight into the realities of family life with a baby, child, teenager or adult with Down syndrome in Ireland today.

    “… more than medical” is a resource for parents with a pre or postnatal diagnosis of Down syndrome for their baby.

    It is also an essential tool for professionals and healthcare workers to ensure complete and balanced information is provided to all parents.

    We joined forces with Rebekah Docherty and Michelle Clark from Lose the Label CIC – who are both parents of children with Down syndrome, to develop ‘…more than medical’.

    The booklet includes a combination of experiences from the charity’s family and adult members from around the country.

    The booklet is distributed free-of-charge to maternity and children’s hospitals across the country and HSE Early Intervention Teams.

    If you would like to order copies, please contact us at or call us on 01 4266500.

  • Informing families

    The Informing Families website provides information for parents and professionals at the time of a child’s diagnosis with a physical, sensory or intellectual disability or when there are concerns about a possible diagnosis.

    On, professionals can access best practice guidelines for communicating with families, and practical tools and materials to help implement these recommendations.

    The website also includes a one-hour e-learning programme to support professionals in their practice when communicating sensitive or difficult news to families.

    Down Syndrome Ireland consulted in the development of the resources for this site.