What We Do

The five pillars that underpin the organisation’s work include:-

Establish a multi-stakeholder, multi-disciplinary network in Ireland to advocate for systems change.
Partner with global Patient Organisations, Multi-Disciplinary Healthcare Professionals, Researchers, Educators, Industry Partners and Policymakers to foster the exchange of standardised and evidence based best practice across a spectrum of domains i.e. education, healthcare, research, service development and policymaking.
Mentor and support countries who wish to establish Patient Organisations.
Mentor and support individual patient advocates.
Advocate for improved psychological, social, financial and healthcare support for families affected by premature birth.

Celebrate World Prematurity Day on November 17th.
Celebrate International Awareness Days for medical conditions that adversely affect pregnancy or can result from a preterm birth i.e. Pre-Eclampsia, IUGR, Gestational Diabetes, Lung Disease, Eye Disease, Intestinal Disease, Brain Disease, Cerebral Palsy, Epilepsy.
Present at international Medical Congresses and Conferences
Social media campaigns.
Establish constructive dialogue with political decision makers.
Engage with community groups not affected by preterm birth through ancillary campaigns i.e. Knit For NICUs, Incubator Covers Project, Angel Gowns Project etc.
Develop and deliver information/education workshops to primary, secondary and third level students.
Foster a dialogue with healthcare professionals, researchers, educators and industry partners.

Improve the education and training for healthcare professionals to ensure that the needs of preterm infants and their families are met and that evidence based healthcare practices are implemented.
Provide hard and soft copy material and workshops for families on topics relevant to the care of their infant in the NICU and beyond.
Provide hard and soft copy education material and workshops for healthcare professionals.
Promote research and provide research support as embedded patient researchers to improve prevention, treatment and care and long-term health.
Develop and deliver education modules for patient experts.
Develop and deliver education modules for student teachers.
Supervise PhD students
Develop and review Clinical Guidelines.
Develop national and international research networks
Embed the patient voice in Clinical Audits

Provide pre-conceptual, antenatal and post-natal information and education to families.
Support and mentor families affected by a premature birth and families with infants in the NICU i.e. Peer-To-Peer Support, Online Facebook Parents Forum – “Irish Neonatal Health Alliance Parents Forum”, Printed Material, dedicated Helpline, Education Workshops etc.
Empower families to become primary caregivers to their infants.
Facilitate a platform to access developmental follow up care.
Supporting Neonatal Healthcare staff by developing education material.

Engage with the national and international research community as embedded Patient Researchers from concept to dissemination.
Prioritise and guide the direction of neonatal research.
Set research agendas, develop research protocols, assist with recruitment and retention.
Provide advice of patient participation materials in research studies, provide guidance on methodologies, data collection and analysis, ethics.
Facilitate the dissemination of research findings through journal publications and conference presentations.
Develop and deliver education modules for researchers about Patient and Public Involvement in Research
Embed the patient voice in National Research Ethics Committees.
Embed the patient voice in the Medicines Regulation arena.
Embed the patient voice in Health Technology Assessments.
Develop National Registries to collect data.
Perform public reviews on behalf of research funding bodies
Review manuscripts for publication in medical journals
Embed the patient voice at the European Medicines Agency.