Parent Advisory Board
EFCNI’s Parent Advisory Board was launched in 2013 . The ten international members of the board are elected for five years by our partner parent organisations and meet quarterly in digital meetings as well as once a year at the Parent Organisation Summit to discuss upcoming milestones and how to achieve them. To acknowledge the valuable input from the patient’s perspective, the Patient Advisory Board (PAB) was renamed into Parent and Patient Advisory Board (PPAB) in 2023.
Our current Parent and Patient Advisory Board includes representatives from Australia, Bulgaria, Canada, Ghana, Greece, Ukraine, USA, Lithuania, Northern Ireland and Portugal.
Parent and Patient Advisory Board (May 2023-April 2027)
As the Executive Director of the Canadian Premature Babies Foundation (CPBF), Fabiana leads the organization in its mission to support and raise awareness about the challenges faced by premature infants and their families.
Fabiana’s journey began while she was in the neonatal intensive care unit (NICU) with her surviving twin, who was born extremely preterm. It was during this time that she became involved in the study of Family Integrated Care (FICare), a model of care that emphasizes involving parents in the care of their premature infants. Inspired by her experience, Fabiana dedicated herself to volunteering in the NICU at Mount Sinai Hospital and became an ambassador for FICare, spreading awareness about this model of care across Canada and internationally.
Fabiana serves as an advisor on various committees and advisory boards. She is a member of the International Steering Committee for FICare, which highlights her expertise and involvement in shaping the direction of this care model on a global scale. She is also involved with the Child-Bright Network, an initiative that focuses on improving outcomes for children with brain-based developmental disabilities, and the PREMSTEM project, which focuses on stem cell research for premature infants. Furthermore, Fabiana sits on the advisory board of the Canadian Institute for Health Research’s Institute of Human Development, Child and Youth Health (CIHR-IHDCYH), contributing her insights to inform research. She collaborates with researchers nationally and internationally.
In 2020, she received the EFCNI (European Foundation for the Care of Newborn Infants) awards for her outstanding work with the Canadian Premature Babies Foundation.
Oleksandra Balyasna is the head of the Early Birds Ukrainian Preemie Parent Association which she co-founded in 2016. Oleksandra is a mother of a child born preterm in 2012. During her stay in the NICU Oleksandra faced a lack of information, support and basic goods for preterm babies, leading her to the foundation of a social business with the production of nests and tiny clothes for babies.
Since 2016 Oleksandra is mainly taking care of the parent association, where the dialogue between parents, professionals, government and pharmaceutical companies is organized. Prior to working in the Association Oleksandra was engaged in the international corporate sector within internal communication tasks and had been involved in charity projects helping children, elderly people, animals.
Since the start of full-scale war Oleksandra is engaged in the Humanitarian Project Polish Medical Mission with trainings on patient rights in obstetric and neonatal services in Ukraine.
Since 2019 she is a member of the Parent Advisory Board of EFCNI.
Selina is a mother of a surviving preterm child in Africa, an advocate for Maternal and Newborn Health and the Founder and Executive Director of the African Foundation for Premature Babies and Neonatal Care (AFPNC). Selina is a Human Resource Professional with over 10 years’ experience in working on local and international human capital development projects.
She holds a Bachelor’s degree in Business Administration (Human Resource Management), certificates in Strategic Planning, Project Management and Communication and is also training to be a Lawyer. In August 2016, the Ghana Health Service appointed her as a member of the Advocacy & Communication Sub-Committee for National Newborn and Child Health. She was featured and contributed to a 2018 joint report by World Health Organization and UNICEF titled ‘Survive & Thrive: Transforming care for every small and sick baby’.
In Africa, she has pioneered several intervention initiatives, policy, research projects and is a sought after conference speaker in her capacity as a Parent Representative and the Executive Director of AFPNC. Selina received a prestigious award in January 2019 from EFCNI for her outstanding work.
Estela Coutinho is board member of the Portuguese preemies association XXS, which she co-founded in 2008. She has two children, an extremely premature boy (26 weeks), and a pre-term girl (34 weeks).
Estela holds an MSc Business Administration, and she is certified in digital strategy and project management. She has a proven track record for the well-being of patients, being an advocate for Maternal and Newborn Health. She is passionate about engaging, mobilising, aligning resources and raising awareness on the global growing challenge of preterm birth and its significant impact on patients, healthcare professionals, families, and society, and she has deep experience in establishing successful partnerships and alliances with key stakeholders.
She also cooperates as patient on several international R&D studies. She is a Patient Expert for EMA – European Medicines Agency, an independent advisor for medtech companies, and a volunteer for WHO, UNICEF and EPFL EssentialTech Centre. She received one of the first awards ever granted by EFCNI for “Best Idea of the Year” and getting support by worldwide known Cristiano Ronaldo on European Call to Action for Newborn Health.
A native of Portugal, Estela currently resides in Lausanne, Switzerland.
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 of Directors for NICU Parent Network (NPN), a Parent, Patient, Public Advisory Board (PPPAB) member for European Foundation for the Care of Newborn Infants (EFCNI) and the European Standards of Care for Newborn Health (ESCNH), and a Chair Committee Member for the Global Alliance for Newborn Care (GLANCE). She is an experienced international speaker and presenter.
A native of the USA, Gigi currently resides in London, England.
Alison was appointed as CEO to TinyLife, Northern Ireland’s(NI) only premature baby charity in April 2013. This unique charity delivers services to parents in the neonatal unit, in family homes and in local communities as well as leading on research, advocacy, training and campaigning for families of premature babies.
With over 25 years experience working in the NGO sectors, Alison previously worked as a senior manager with babies, child and young people and their families providing education, support and guidance In her previous position she worked for 12 years as the Director of The Parenting Forum NI on parental engagement, consultation and co-design and co-production projects. Over the years she has been a Trustee with several NGOs in NI, UK and Europe campaigning for parental engagement in the development of strategies, policies and practices that affect families, children and young people.
She is currently the lay member on the Board of Neonatal Network NI, NI Maternal and Infant Steering Group, Breast Feeding Strategic Implementation Group and Infant Mental Health Implementation Group. She has been co applicant and supported a number of research projects and has published a number of articles in journals. Alison holds twos CIPD Diplomas and Masters in Voluntary Sector Management
Nina Nikolova is a co-founder and a chairwoman of the first Bulgarian foundation for premature babies. The foundation works closely with parents, medical care professionals, stakeholders and other NGO’s. The Foundation also seeks to raise awareness of preterm birthas a serious problem, and to educate the public to reduce the rate of preterm birth and give better start for all babies born too soon. Nina is a mother of twins born preterm.
Nina has a bachelor’s degree in French linguistics, and experiences as a translator and as a primary teacher; In the last 18 years Nina has been working in the real estate area as a sales representative, Sales and Marketing Manager, and for the past 13 years as a Sales manager in the biggest real estate holding in Bulgaria; She is working in a dynamic area with different clients and companies.
Nina Nikolova is a member of the Parent Advisory Board of EFCNI since 2019.
Kylie Pussell co-founded Miracle Babies Foundation in 2005 and has been a Board Director since 2009.
After suffering a miscarriage and losing twin babies at 16 weeks, Kylie gave birth to her daughter Madeline at 30 weeks and was diagnosed with Cervical Incompetence. Madeline was cared for in Liverpool Hospital’s NICU for 6 weeks. Two years later, following a further miscarriage, Kylie delivered twins at just 25 weeks. Both were resuscitated at birth and cared for by the NICU. Sadly Kylie’s son Marcus passed away due to complications from his extreme prematurity. Her daughter Scarlet required ventilation and surgery. Scarlet was cared for in the NICU at Liverpool and Westmead Children’s Hospital and was discharged home just before her due date, 4 months later. Kylie’s son Liam was born at 38 weeks through planned c-section following a transabdominal cerclage.
Kylie, a qualified counsellor, has played an integral role in the expansion of the Foundation’s program NurtureTime, the introduction of Miracle Babies Foundation to hospitals nationally and the development of national resources. She developed and implemented Miracle Babies Foundation’s successful volunteer program, designing National Volunteer Induction and Training with TAFE NSW. Kylie was selected in the inaugural The Growth Project in 2015.
Kylie delivers presentations and forums on the Foundation to community and corporate, both nationally and internationally and shares her personal journey with her children, delivering parent support and positive change for premature and sick babies. Kylie highlights the needs for parents and families in the NICU and the years ahead. Kylie leads support for our bereaved families and assists families and educational institutions in the learning, social and emotional challenges some of these miracle babies experience in the early years, school aged years and adulthood. Kylie has been an instrumental leader in many new services the Foundation delivers, most recently Nurture ‘E’ – The EEE Impact. This information hub is designed to assist families through different life stages of their growing and developing child beyond the baby, infant and toddler years and supporting families through primary and high school right through to adulthood. Nurture E – The EEE Impact has been created in collaboration with parents and health professionals to provide families with Evidence, Education and Empowerment.
She is CEO of the Foundation and passionate in driving the expansion of services and resources across Australia for all families to be supported, educated and empowered.
Kylie was Secretary of the Board from 2009 to 2017 and appointed as CEO by the Board in 2017.
In July 2019 Kylie became a Founding Committee member of GLANCE and in December 2019 was appointed to the Chair Committee of GLANCE.
During 2019 and 2020 Kylie was a member of the Working Group on the ICHOM Preterm and Hospitalized Neonates Standard Set and in September 2020 was named Western Sydney Women – 2020 Community Woman of the Year. Kylie was also awarded ‘Highly Commended’ in the Western Sydney University Women of the West Awards for Community 2020.
In July 2021 Kylie became a member of the World Prematurity Day Parent Advisory Board and the World Prematurity Day Global Planning Group. In September 2021 she joined NSW Health Agency for Clinical Innovation as a consumer representative on Paediatric and Neonatal Clinical Care Task force and the ACI Maternity and Neonatal Executive Committee. Kylie is a parent representative on numerous research projects, a previous member of the PSANZ Perinatal Palliative Care Special Interest Group and current member of the PSANZ Perinatal Ethics Special Interest Group.
In April 2022 Kylie was awarded as a Finalist in the NSW Women Of The Year Award – Woman of Excellence. In May 2022 Kylie presented the Nurture ‘E’ – The EEE Impact information hub at the global EFCNI Parent Summit in Germany. In 2022 she was invited to join the Advisory Board of parent organisation Prematuridade in Brazil. 2022 Kylie co-authored the article Impact of current Australian paid parental leave on families of preterm and sick infants published in the Journal of Paediatric and Child Health. Kylie also contributed to the published book Neonatal Nursing: A Global Perspective.
Kylie is a consumer representative on the National Preterm Birth Prevention Collaboration and in 2023 was elected to the EFCNI Parent and Patient Advisory Board.
Asta Radzevičienė is a mother of premature baby born on 26 weeks. She is a founder of the first Lithuanian premature baby association “Neišnešiotukas” established and joined EFCNI in 2012, this organization is devoted to giving preterm babies the best possible chance of survival and reaching their full potential.
She implements innovative projects with families, hospitals and institutions, involving medical societies and NGO’s and is also a member of NIDCAP Family advisory board and observer in Maternity Hospitals in Lithuania.
Asta has a Masters degree in Management and Business Administration. She is a member of the Parent Advisory Board of EFCNI since 2019. This year she initiated educational national project “Growing Lithuania” based on the Standards to connect all working communities and professionals and promote newborn health.
Asta and her organization have been recognized for their efforts with multiple awards, including the EFCNI award in 2016, Major of Vilnius award in 2020 and the President of the Republic of Lithuania award in 2022. She has also launched a jewelry project “Vilties feja” (“Fairy of Hope”) to provide hope for those in need.
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.
She has a wide teaching experience as a professor at Faculty of Health and Caring Professions of the Technological Educational Institute of Athens, currently known as University of West Attica, for 23 years and she is now teaching postgraduate courses in the Medical School of the University of Thessaly and the Medical School of 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. Moreover, she has worked for many years on a voluntary basis as coordinator and leader in European projects in several countries targeted to multinational groups of youngsters at risk of social exclusion. Dr Eleni Vavouraki is a member of the Parent Advisory Board of EFCNI.