Contact with Patient Groups and Networks

Close liaison, communication and partnership with relevant patient groups are crucial elements of the programme. Working through the Patient Advisory Board, our network of patient groups will critique and contribute to every facet of the study, from design to dissemination of information materials to the public.

Following patient support organisations will aid the project:

Preeclampsia Foundation (USA), an empowered community of patients and experts, providing support and advocacy for the people whose lives have been or will be affected by the condition – mothers, babies, fathers and their families.

Action on Pre-eclampsia (UK), a national charity aimed at raising public and professional awareness of pre-eclampsia, improving care, and easing or preventing physical and emotional suffering caused by the disease.

Gestose Frauen e.V. (Germany), German peer-help group, active since the mid-1980s.

Association de Prévention et d’Actions contre la Pré-Eclampsie (France), prevention, education, awareness and training on the pathology of pre-eclampsia.

Präeklampsie Verein Österreich (Austria), a non-profit organization, founded in the fall of 2007 under the initiative of mothers and fathers who were personally affected by preeclampsia and / or HELLP syndrome.

Sulle Ali di un Angelo (Italy), a Trieste-based voluntary organization, founded in 2005 by the will of a group of parents, with the aim to support and help people who have lost a child in prenatal, perinatal or neonatal and to raise awareness on social and health care on neonatal mortality or severe prematurity caused by diseases that make high-risk pregnancies.

Stichting HELLP-Syndroom (Netherlands), a foundation established in March 1994 with the intention of women whose pregnancy was complicated with (pre)-eclampsia and / or HELLP syndrome to provide information and peer support.