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The Parent, Patient and Public Advisory Board (PPPAB)

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The Parent, Patient and Public Advisory Board (PPPAB) is an integral part of the Chair Committee for the European Standards of Care for Newborn Health (ESCNH). Comprising eight dedicated parent and patient advocates, each with an equal vote, the PPPAB ensures that the patient voice is at the heart of decision-making. By actively participating in shaping and reviewing the standards, they bring invaluable lived experiences and perspectives to improve care for preterm and ill newborns and their families across Europe.

ESCNH Parent, Patient and Public Advisory Board (PPPAB) members

Vilni Verner Holst Bloch
Vilni Verner Holst Bloch is a parent of a preterm infant born in 2009. Mr Bloch soon engaged with national Norwegian parents organization in 2010. He quickly became the national parent contact person towards EFCNI and participated in the first Parents Advisory Board. Later he also took part in the Topic Expert Group on Data collection and documentation related to the development of European Standards of Care for Newborn Health (ESCNH). He hosted the national seminar launching the ESCNH and the Call to Action in 2018, and for this the Norwegian parents organization received the EFCNI Award in 2019. In 2022, he was elected to take part in the ESCNH Parent, Patient and Public Advisory Board (PPPAB) from 2023 and onwards. He has a MSc in landscape ecology and resource geography, and works as senior advisor at statistics with geographic information systems and population registers.

Michel Collart
Michel Collart is founder of Noah’s Ark Belgium, a parent organisation providing support to parents and families of newborn infants in intensive care. His second son “Noah” was born extreme premature in 2019, was separated from his mother for a whole week and eventually lost his battle for life after 48 days. Michel is a strong advocate for Zero Separation and represents parents and patients in several parent advisory boards on ethics, family integrated care and the development of medical procedures and treatments. Trained in law and marketing he started a career in pharmaceutical marketing, becoming a senior director in international marketing services agencies … eventually retiring early to throw all his energy and competencies to make sure every newborn gets equal chances not only to survive but to thrive. Michel is an absolute believer in “collaboration for achievements”.

Stephanie Ernst
Stephanie Ernst is the founder of TAPS Support, an organisation dedicated to improving outcomes for monochorionic twins. Her twin daughters were born at 31 weeks with twin anemia polycythemia sequence (TAPS). Her experience has fuelled her determination to raise awareness for twins and prematurity. She is a passionate writer on rare diseases, building strong online communities, cooperation between patient groups and medical professionals, and naturally, multiple births, and has been widely published. She is also involved in research with two other monochorionic twin parents. She has successfully published several research articles with them, focussing on screening and updating guidelines. She also sits on the International Council of Multiple Birth Organisations board. She works as a freelance writer and content specialist.

Paula Guerra
Paula Guerra is one of the founders of the Portuguese preemies association XXS – Associação Portuguesa de Apoio ao Bebé Prematuro, being an executive board member of XXS since the creation of the association in November 2008. She has two daughters, one born in 1993 as a term baby and a second one, an extremely preterm born girl, born in 2001 with 26 weeks of gestation and 615g of weight. Since 1993, Paula worked in IT development departments of three diferent Portuguese banks and she is since 2010 the Head Talent Management of the IT Department in one of those Portuguese banks. Paula Guerra is a member of the Parent Advisory Board of EFCNI.

Gigi Khonyongwa-Fernandez
Gigi Khonyongwa-Fernandez, is the mother of four angel babies and a surviving twin born at 24 weeks. She is both an International Coach Federation (ICF) accredited Professional Coach and a Trauma-Informed Certified Coach, and founder of GKF Coaching and Consulting. Her niche areas are leadership and organisational wellness, NICU leaders/community, diversity, empowerment, and wellbeing. She is passionate about imbedding joy and clarity within leaders in any sector and throughout the workplace culture. Gigi’s clients range from individuals and professional teams to medium to large-size organisations across the healthcare, education, faith-based, government, industry, and corporate sectors. She also partners with several consultancy groups to help them deliver on a range of leadership, diversity, and organisational development initiatives and is a vocal advocate for equity in the healthcare and educational realms. Gigi holds a BSc in Occupational Therapy (USA), MSc in Health, Population and Society (UK) and a Diploma in Personal Performance Coaching (UK/USA). She has almost 20 years of international clinical, strategic and project management experience within the healthcare sector both in the USA and UK health systems and holds global board appointments in the maternal-infant health sector. Gigi currently serves as the President of the Board for NICU Parent Network (NPN), a PPAB member for European Foundation for the Care of Newborn Infants (EFCNI), and a Chair Committee Member for the Global Alliance for Newborn Care (GLANCE). She is an experienced international speaker, presenter, and facilitator. A native of the USA, Gigi currently resides in London, England

Livia Nagy Bonnard
Livia Nagy Bonnard has been one of the founding members of Right(s) beside you Association-Patient organisation for preterm infants in Hungary. The Association brings together doctors, medical professionals, policy makers, NGOs, and parents of preterm children in order to improve the quality of care. She advocates for family-centred care as an EUPATI patient expert in Hungary and Europe-wide, as part of the Faculty of FINE (Family and Infant Neurodevelopmental Education) training in Hungary and as a patient researcher on several national and international research projects. Though born in Hungary, she now lives on the French-Swiss border, so she has a deep insight into the NICU and follow-up systems in Hungary, France, and Switzerland. She is a mother of 4 children, 3 girls, and a preemie boy who was born at gestational week 27 and who lives with many challenges as consequences of his early birth. Livia is a trained nurse, she worked mostly with babies and children in cardiac departments and a CICU (cardiac intensive care unit). Livia Nagy Bonnard is a member of the PPPAB of the ESCNH since 2015. PPAB member for European Foundation for the Care of Newborn Infants (EFCNI) between 2015-2023, and a Chair Committee Member for the Global Alliance for Newborn Care (GLANCE).

İlknur Okay
After 22 years of professional life in major local and international companies as a mid-level manager, Ilknur dedicated her career to the good of humanity. She obtained a CTI professional coach certificate from the USA and also earned accreditation as an ACPI-certified parent and family coach. Ilknur further expanded her knowledge by obtaining an MSc degree in Psychology along with a certificate in Interpersonal Therapy. In addition, she possesses expertise as a conflict management coach. She co-authored two published books: the first one caters to families with multiples, titled “Life with Multiples: From A to Z,” while the second book is geared towards families with premature babies, titled “From Incubator to World.” Her diverse cultural background and extensive experience working with various cultures and communities have equipped her with a deep understanding of the unique needs of individuals and families, particularly those who are less privileged and facing urgent challenges. Besides being co-founder and chairwoman of the Turkish parent organisation El Bebek Gül Bebek, she is mother to former 30 weeker twin girls. Since 2008, Ilknur has been proudly advocating for babies born preterm and their parents in Turkey, actively engaging in campaigns, petitioning efforts, presentations at medical congresses, the establishment of psycho-education models, and the training of parents, among other impactful initiatives.

Eleni Vavouraki
Dr Eleni Vavouraki is a pulmonologist with a PhD in pulmonary rehabilitation; she is also specialised in Complementary and Alternative Medicine. After becoming an aunt of triplets that were born very prematurely (26+4), she together with the triplet’s parents co-founded the association Ilitominon, of which she is the President since 2011. For 23 years she was a faculty member of TEI-A, currently known as University of West Attica, and now she is teaching postgraduate courses in the Medical School of the University of Thessaly and the National and Kapodistrian University of Athens. Eleni is also a member of Therapeutic Riding Association of Greece, a NGO where children with disabilities (mainly due to prematurity) are helped to cope by improving their physical and psychological condition. Dr Eleni Vavouraki is a member of the Parent Advisory Board of EFCNI.

The PPPAB in a nutshell

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Why the ESCNH benefit from including the patient and parent voice

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Why the individual members decided to join the PPPAB
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