What We Do
The five pillars that underpin the organisation’s work include:-
- Establish an interdisciplinary network in Ireland to advocate for system change.
- Partner with global Parent Advocacy Groups, Multi-Disciplinary Healthcare Professionals, Researchers, Educators and Policymakers to foster the exchange of standardised and best practice information across international borders.
- Mentor and support countries who wish to establish Parent Advocacy Groups.
- Advocating for improved financial support for families affected by premature birth.
- Targeted media work on World Prematurity Day, November 17th and Awareness Days for medical conditions affecting pregnancy and infant development i.e. Pre-Eclampsia, IUGR, Gestational Diabetes, Lung Disease, Eye Disease, Intestinal Disease, Brain Disease
- Present at international Medical Congresses and Conferences
- Social media campaigns.
- Establishing constructive dialogue with political decision makers.
- Engaging with community groups not affected by preterm birth through ancillary campaigns i.e. Knit For NICUs, Incubator Covers Project, Angel Gowns Project etc.
- Providing information workshops to primary, secondary and third level students.
- Fostering the dialogue with healthcare professionals.
- Improving the education and training for healthcare professionals to ensure that the needs of families are met and that best practices are implemented.
- Providing hard and soft copy material and workshops for families on topics relevant to the care of their infant in the NICU and beyond.
- Promoting research and providing research support as patient collaborators to improve prevention, treatment and care and long-term health.
- Provide pre-conceptual, antenatal and post natal information and education.
- 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.
CLICK HERE to download our information leaflet.
CLICK HERE to download our ’10 things to know about the 1 in 10′ leaflet
- Engage with the national and international research community as Patient and Public Involvement collaborators.
- Prioritise and guide the future 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.