The International Stillbirth Alliance is conducting research with the aim of finding and raising the voices of parents bereaved by stillbirth to strengthen advocacy for stillbirth prevention and post-stillbirth bereavement support. One of the purposes of this initiative is to develop a global registry of parent support groups and organisations. We are in the process of developing this registry and I am reaching out to ask you for details of organisations and/or point persons that you think could be included in the final registry. 

As a guide, we are using the following definitions:

Formal parent support organisations: these exist in full or in part to provide bereavement support to parents who have experienced a stillbirth (noting that this is often offered alongside support to parents who have experienced a newborn death or other pregnancy loss).

Informal parent support groups/networks: these exist to provide informal and group support for parents who have experienced a stillbirth (noting that this is often offered alongside support to parents who have experienced a newborn death or other pregnancy loss) and may include, but are not limited to, meet-up and community groups, Facebook groups and pages, and online forums.

Parent support point persons: these are individuals who, through their professional work, for example as midwives or doctors, have helped to facilitate support activities for bereaved parents. Point persons may or may not create formal or informal networks or support groups but they will have explicit intent to support parents and/or create a support group or be offering informal support to parents. Initially, we are only looking to locate point persons in countries where there are few or no formal organisations.     

Please could you send names, contact details (including website URLs) for organisations, groups and/or point persons that you know of to Vicki Ponce Hardy at parentvoices@lshtm.ac.uk with the subject header 'PVI - contact details' and she will contact them directly, or alternatively fill out this short survey at https://bit.ly/PVIRegistry.

We would especially appreciate contact details of any group, organisation or person that may be difficult to find via a Google search.