Unfortunately many genetic disorders can lead to a child living a shorter life than normal which is difficult for parents, siblings, extended family and friends to cope with. The below organisations offer support for those affected by a death, especially parents and siblings.

Bereavement Advice Centre

Provides practical information and advice on the many issues and procedures that face us after the death of someone close.

0800 634 9494

Child Bereavement UK

Supports families and educates professionals of any age dies or is dying, or when a child is facing bereavement.

0800 028 8840

Child Death Helpline

The Child Death Helpline aims to provide a quality freephone service to anyone affected by the death of a child of any age.

0800 282 986

Cruise Bereavement Care

Offers free information and support to anyone who has been affected by a death.

0844 477 9400

Grief Encounter

Supports bereaved children and families to help alleviate the pain caused by the death of someone close.


Sibs support people who have experienced the loss of their disabled brother or sister, either during childhood or as an adult.

01535 645 453                  

Stillbirth & Neonatal Death Society

Provides support for parents and families whose baby is still born or dies soon after birth

The Compassionate Friends

An organisation of bereaved parents and their families offering understanding, support and encouragement to others after the death of a child.

Winston’s Wish

Supports bereaved children and young people following the death of a parent or sibling. Helpline:

0845 203 0405