Parent Organisations Meeting
Since 2008 in Rome, where parents’ representatives from 18 countries came together, the EFCNI parent organisations meetings take place every year to support the cooperation and exchange between national parents’ associations.
During these meetings representatives of national parents’ organisations share ideas, exchange experiences, and receive training and education with the common goal to improve the situation of maternal and newborn health and in particular of preterm birth around the world.
15th Parent Organisations Meeting
As a time honoured tradition, January was the time of year again where EFCNI hosted its meanwhile 15th Parent Organisations Meeting (POM) in Freising, Germany. From 25 to 27 January, about 100 participants from Europe, Africa, North America (in total from more than 30 countries) discussed preterm health topics, shared knowledge and experiences, networked and motivated each other.
The meeting offered again a great opportunity for international organisations to present their work, activites and targeted projects to the group of international parent representatives. Katarina Eglin, spokeswoman of Das frühgeborene Kind e.V., Germany, introduced the work of developing and establishing Guiding principles for palliative care and grief counselling in neonatology. She provided insights into the emotionally challenging field which is still a taboo topic and often leaves parents, friends and relatives as well as healthcare professionals alone. With hands-on advice, for example what or what better not to say to bereaved parents, the guidelines aim at providing pragmatic support. An English version shall be available soon. Corina Croituro, Head of UnusiUnu, Romania, introduced the remarkable work of her organisation. The project Little Human in Therapy implements – little by little – family centred care in the hospital settings. With FINE Trainings, funded and organised by UnusiUnu, the parents and the clinical care givers are given teachings in how to handle the little patients in a medically appropriate, yet empathetic way. As in the last year, the participants of this year’s POM got to enjoy a lovely and touching photo exhibition “Dads in the Focus”, which Oleksandra Balyasna from Ранні пташки (Early Birds), Ukraine, realised together with the support of the Ministry of Health and the Association of Neonatologists of Ukraine. The exhibition stressed the importance of fathers in the NICU as equal partners in parental care. It was presented first in Kiev and then on display during the three-days-meeting.
This year’s gathering also marked the launch of EFCNI’s latest large-scale project: GLANCE – the GLobal Alliance for Newborn CarE. GLANCE will put networking for and representation of preterm born babies and families on a global level. In the future, parents and families from the different corners of the world shall join forces to carve the way for the best start in life for every newborn – worldwide.
The first day of the POM ended with the traditional EFCNI Award Ceremony. This year’s well-deserved winners are: the team of MTÜ Enneaegsed lapsed, Estonia, the team from Prematurforeningen, Norway, and the team of African Foundation for Premature Babies and Neonatal Care (AFPNC), Ghana. EFCNI cordially congratulates all awardees.
The second day of the POM was dedicated to talks, workshops and last but not least, the election and announcement of the new Parent Advisory Board. As in the year before, EFCNI welcomed external speakers from the field of neonatology and research. Dr Michael Zeller from the Hospital Dritter Orden, Passau, Germany, elaborated in his talk “Yes, we can. Opportunities and challenges for the care of newborn infants”, how the re-design of their NICU followed the approach of family integrated care and how this has significantly and provably improved patient outcomes. Dr Lukas Mileder from the Medical University Graz, Austria, gave an impressive talk on “The importance of simulation training in the NICU”. Dr Mileder is involved in SimCharacters, the company founded by neonatologist Dr Jens-Christian Schwindt, that came up with Paul, the preterm simulation doll enabling doctors and students to train emergency scenarios under real-life conditions. In the afternoon sessions, Dr Jennifer Zeitlin, Rym El Farei and Anna-Veera Seppänen from INSERM* Paris, France, provided a workshop on “Care, treatment, and follow-up for very preterm born babies and children in Europe – how it is and how it should be”. Furthermore, they highlighted the relevance of data collection, analysis and distribution to push evidence based care for very preterms further. EFCNI was also very happy to have Allison McNulty giving a workshop on “Family support and volunteers”. Project Management and Stakeholder negotiations were further workshops offered by EFCNI to the participants.
With the current Parent Advisory Board parting, it was time to set up the new board of representatives. To respond to the growing EFCNI network also outside of Europe, two global members will now complement the eight European board members. Our congratulations go to Oleksandra Balyasna, Ukraine, Mandy Daly, Ireland, Paula Guerra, Portugal, Alison McNulty, Northern Ireland, Livia Nagy Bonnard, Hungary, Nina Nikolova, Bulgaria, Asta Speičytė Radzevičienė, Lithuania, and Dr Eleni Vavouraki, Greece, Selina Bentoom, Ghana, and Gigi Khonyongwa-Fernandez, USA. Our heartfelt thanks go to the former Parent Advisory Board for the committed work in the last four years.
The meeting was concluded with an interactive Workshops session on Sunday where participants extended experience in reading and interpreting complex research studies.
EFCNI would like to express its sincerest thanks to everyone participating in this year’s POM, making it a stimulating and successful meeting. Special thanks go to the speakers for their motivating and informative presentations and workshops.
We are already looking forward to next year’s event. Our Parent Meeting is also growing up and becomes then the first EFCNI Parent Organisations Summit 2020.
*Institute National de la Santé et de la Recherche Medicale
14th Parent Organisations Meeting
As a time honoured tradition, January was the time of year again where EFCNI hosted its meanwhile 14th Parent Organisations Meeting (POM) in Freising, Germany. About 80 participants from Europe, Africa, Canada, and North America, in total from more than 30 countries, gathered to discuss preterm health topics, share knowledge and experiences, and motivate each other.
The meeting was again the perfect event for other international organisations to present their work, events and projects to the group of parent representatives. Alison McNulty, CEO of Tiny Life, Northern Ireland, introduced the remarkable work of her organisation and elucidated the importance of usability of a website in times where digital devices have become inevitable in health issues. Katarina Eglin, spokeswoman of Das frühgeborene Kind e.V., Germany, presented the app ”Hallo Frühchen“ (Hello preemie) for siblings of preterms developed by her association. The app aims at bringing preterms and their older siblings closer together as hospitalisation often impedes bonding between brother or sister and the newborn. Nina Nikolova from Our Premature Children, Bulgaria, gave an inspiring presentation on how to create a paid position in a national parent organisation. With a creative business-oriented approach, she managed to establish her organisation within a few years only. Participants of this year’s meeting also got to enjoy a wonderful photo exhibition which Asta Speicyte Radzeviciene from Neisnesiotukas, Lithuania, realised together with Jolanta Leonaviciute Grigorjeviene. “Born with the sign of genius” was presented first in Lithuania and then on display during the meeting. We hope many more will get to see the beautiful and encouraging pictures showing that preterms are no children of sorrow.
This year’s gathering also celebrated a special occasion: the 10th anniversary of EFCNI! Silke Mader, Chairwoman and co-founder of EFCNI, and Nicole Thiele, Vice Chair of the Executive Board, took the chance to reflect on the time that has passed and acknowledged all allies, supporters and friends of EFCNI. “When we held our first Parents Meeting in Rome 2008”, recalls Silke Mader, “we were just a small group of people. Today we need a ballroom to fit as all in one place. Together we can make that change happen and make the start in life better for preterm babies.”
The ten years’ celebrations started with the traditional EFCNI Award Ceremony. This year’s winners Tiny Life, Early Birds and last but not least Das frühgeborene Kind e.V. Silke Mader and Nicole Thiele honoured the commitment, persistence and creativity of the three winners Alison McNulty, Oleksandra Balyasna and Katarina Eglin as well as their entire teams. EFCNI cordially congratulates all three organisations.
As in the year before, EFCNI could welcome external speakers from the research field. Dr Jennifer Zeitlin and Anna-Veera Seppänen from INSERM* based in Paris, France, provided an overview and current insights of the pan-European SHIPS** and RECAP preterm*** projects. Furthermore, they highlighted the relevance of data collection, analysis and distribution to push evidence based care for very preterm infants further.
Due to its success from last year, EFCNI was happy to have Charlotte Bouvard and Vincent Desdoit from SOS Préma, France, giving their workshop one more time where they coached the participating parents in how to work efficiently with volunteers.
EFCNI would like to thank everyone participating in this year’s POM for a stimulating and successful meeting. Special thanks go to the speakers for their motivating and informative presentations and workshops.
*Institute National de la Santé et de la Recherche Medicale
**Screening to improve Health In very Preterm infantS in Europe
*** Research on European Children and Adults born Preterm
13th Parent Organisations Meeting
The 13th Parent Organisations Meeting, powered by EFCNI, took place from 27 to 29 January 2017 in Freising north of Munich. With about 75 participants from more than 30 countries it was the biggest ever. EFCNI had the honour to welcome parents and healthcare professionals from Ghana, Belarus and Brazil for the first time. This meeting has proven that this family is growing and becoming even more international.
As a nice tradition, parent representatives use the Parent Organisations Meeting to present their best practise examples. This year, Livia Nagy Bonnard from Melletted a helyem Egyesület introduced their successful event on breastfeeding in the Hungarian parliament. Monica Ceccatelli and Francesco Collini representing Vivere Onlus from Italy spoke about their continuing effort to promote the Socks for Life campaign. Finally, Dr Eleni Vavouraki, representing the parent organisation Ilitominon, gave some insights in the challenges they had to face when introducing a training on the FINE concept in Greece – “a Greek tragedy with a Happy End!”
One of the highlights was the EFCNI Awards 2017 ceremony: The Irish Neonatal Health Alliance, Melletted a helyem Egyesület from Hungary and SOS Préma from France received an award. In her laudatio, EFCNI Chair Silke Mader and EFCNI Vice Chair Nicole Thiele honoured their outstanding commitment for preterms and ill newborns and their sustainable achievements. EFCNI warmly congratulates Mandy Daly, Livia Nagy Bonnard, Charlotte Bouvard and Audrey Renaud, and their teams.
In addition, EFCNI had the honour to welcome renowned external speakers: Sari Ahlqvist-Björkroth from the University of Turku in Finland spoke about “Close collaboration with parents” – a training programme to facilitate family supportive neonatal care. Dr Jennifer Zeitlin (Inserm) based in Paris, France, introduced the pan-European EPICE and SHIPS projects and their objective to promote evidence based care for very preterm infants in Europe. Finally, Nathalie Bere reportet about opportunities for patient organisations when working together with the European Medicines Agency (EMA).
For the first time ever, one of the seven workshops was held by external speakers: Charlotte Bouvard and Audrey Renaud from SOS Préma accepted the invitation and taught the parents in working with volunteers and in establishing a helpline for affected parents.We thank all the participants for their active attendance.Special thanks to the speakers for their interesting and inspiring presentations or workshops.
Some quotes of participants
„Thank you for having organised such an informative and culturally accepting event. AFPNC is grateful to the EFCNI team for giving us the opportunity to participate. We look forward to the next event. Thank you!”
– Selina Bentoom, AFPNC, Ghana
“The meeting was definitely a watershed for me and for the future of my NGO. It had essential content for all organisations to succeed in their missions. I felt really privileged to be part of the event and to have the opportunity to network with other parent organisations.”
– Denise Suguitani, Associação Brasileira de Pais de Bebês Prematuros, Brazil
“The Parent Organisations Meeting is a very important tool to grow. For learning and networking, but especially for empowering us, create community to become a stronger voice for preemie families.”
– Ilein Bolaños Gonzales, Con Amor Vencerás A.C., Mexico
“The EFCNI annual Parent Organisations Meeting is the best way to learn from each other. Beeing able to listen to best practises gives motivation to keep on fighting for preemies. Together, we are bigger and better!”
– Livia Laas, MTÜ Enneaegsed lapsed, Estonia
12th Parent Organisations Meeting
With more than 60 participants from over 30 countries, the 12th Parent Organisations Meeting powered by EFCNI was a great success. The official meeting began on Friday, 26 February, with a pre-course on “How to build up an organisation”, followed by presentations by parent organisation representatives, sharing their experience and practice.
Gert van Steenbrugge from Dutch’s Vereniging van Ouders van Couveusekinderen (VOC) spoke about A quality mark for neonatal care: parents in the lead! Magdalena Sadecka-Makaruk from Polish Fundacja Wczesniak presented her experiences in Establishing the first follow-up centre in Poland and Denmark’s Karina Rothoff Brix from Landsforeningen Præmatures Vilkår introduced the self-developed App Diary for life. Belgium’s Yannic Verhaest from Vlaamse Vereniging voor Ouders van Couveusekinderen (VVOC) illustrated the way From a small gift to a national project. Highlights of the first evening were the presentations on World Prematurity Day activities as well as the EFCNI Award ceremony.
For the first time, the awards included the new category International. The 2016 awardees are malícek, Neišnešiotukas, Nedoklubko, and in the International category Con Amor Venceras. Saturday’s agenda was full of interesting talks and workshops. Inga Warren introduced the FINE programme (The family and Infant Neurodevelopmental Education) and Karen Koldewijn spoke about the ToP programme (Preventive developmental intervention program for preterm infants and their parents).
The representatives discussed common campaign opportunities for 2016 and beyond and Dr Iris-Nikola Knierim from EFCNI gave a status update about the European Standards of Care for Newborn Health project.On Sunday, after four hours of intense work, it was already time to say good-bye. Many participants left as new friends and members of the “EFCNI family”.
We warmly thank all the speakers and the participants for their commitment. Everybody of you have made an important contribution to the success of the meeting! Togehter we have spent three days of stimulating talks, hard work, serious thoughts, and in total a very agreeable time.
Meanwhile everybody arrived at home safely and their work at the base continues. Please find below a selection of impressions from our 12th annual Parent Organisations Meeting.
Some quotes of participants
“An enriching and inspiring conference. See you next year!”
– Amoura Lisumbu, Premature Baby Fund, Belgium
“What an incredible moment to meet and share experiences with all the representatives from all over the world. It was so enriching. Thank you EFCNI!”
– Audrey Reynaud, SOS Préma, France
“Every time that I participate in EFCNI’s Parent Organisation Meeting is like I’m joining my big international family, to spend three days of sharing thoughts, experience, feelings, and dreams. This is my annual dose of inspiration and motivation in order not to give up, despite the big problems we face in my country. Thank you all!!!”
– Eleni Vavouraki, Ilitominon, Greece
“It was a big pleasure to be part of this great meeting. Thank you for your efforts and amazing work you have prepared for us. Looking forward to the next meeting.”
– Nina Nikolova, Our Premature Babies, Bulgaria
11th Parent Organisations Meeting
40 participants from all around the world joined the 11th Parent Organisations meeting in Freising at the end of January 2015. Every year, more and more participants gather to share experience and impulses for newborn health and in particular preterm birth.
A big thank you to all speakers at the event! Five parent organisations from Europe shared successful campaigns they created over the past year with the meeting participants. Nina Nikolova, of the Bulgarian organisation Our Premature Children introduced the audience to their campaign “The biggest heroes are the youngest ones” which involved three Bulgarian celebrities and raised much awareness in the country. Asta Speicyte Radzeviciene, of Neišnešiotukas in Lithuania shared her awareness campaign which was so successful that it gained the Prime Minister of Lithuania’s wife as a new patron for the organisation. Audrey Reynaud and Charlotte Bouvard of the French organisation SOS Préma talked about their fundraising experience with charity runs. Katharina Eglin from the German organisations Bundesverband das frühgeborene Kind, explained the project Neo(t)räume, a virtual ideal neonatal unit. To conclude the day, Estela Coutinho of the organisation XXS Associação Portuguesa de Apoio ao Bebé Prematuro in Portugal, shared the organisation’s experience with a nationwide project to improve the situation in neonatal wards.
Special thanks to Prof. Luc Zimmermann, President of the European Society of Paediatric Research, who joined the meeting on Saturday and emphasized the need for collaboration between healthcare professionals and parents.
This year, the third EFCNI awards were handed over to organisations that achieved outstanding achievements for preterm and newborn infants in their countries. The awards were granted to the organisations Fundacji Wczesniak Rodzice-Rodzicomfrom Poland, Ilitominon from Greece and VVOC from Belgium.
We would like to thank every participant for their great invaluable contributions and talks. The meeting is growing every year and we are very happy that we could welcome dear organisations we have been working with for many years and numerous new organisations from all around the world. We greatly appreciated all participants sharing their valuable experience and knowledge, as always it was a pleasure and thrilling to meet so many people fighting for the same cause.
10th Parents’ Organisations Meeting
For the tenth time, national parents’ organisations representatives gathered together for three days over the weekend of Valentine’s Day to discuss, share and elaborate on ideas, make new plans and work out strategies.
It was the first time that parents’ organisations joined from several parts of the world with the aim to work together in a strong network and give preterm infants a common voice.
The first meeting day was a chance to recapitulate the big success of World Prematurity Day 2013 and the power of all national activities that contributed to this global movement. We remembered also the beginnings of this awareness day for preterm birth which has its origins in the first ever parents’ organisations meeting back in 2008. At that time during the meeting, on 17 November, one of EFCNI’s founders had a healthy daughter born after he had lost his triplets following preterm birth.
Focus of the meeting were planning World Prematurity Day 2014 and the next big common projects, in particular the EFCNI Standards of Care and the SOCKS FOR LIFE campaigning for the next year.
The French parents’ organisation SOS Préma gave an excellent example of best practice and collaboration between health care professionals and parents in France. The meeting participants also gained insight into the work of new parents’ organisations joining the meeting.
The presentations of external experts of the European Parliamentary Forum on Population and Development (EPF), WHO and PMNCH were certainly the highlights of the meeting.
EPF gave a wonderful insight into the work of EPF to protect sexual and reproductive health of the world’s most vulnerable people in the EU and beyond. Representatives of the World Health Organisation (WHO) and The Partnership of Maternal Newborn & Child Health (PMNCH) introduced the Every Newborn Action Plan: EFCNI, together with all parents’ organisations, will work together to represent the parents’ and patients’ voice in finalizing the Action Plan.
The exchange of experiences and practice revealed the diversity between the countries but also discrepancies in health, care and treatment of mothers and newborns and the challenges parents are facing. All agreed that to overcome these gaps and enable all babies an equal chance for the best possible start in life, implementation of EU wide harmonized standards are essential. The meeting also proved the power of parents’ organisations when they unify and work together.
We would like to thank all motivated parents organisations representatives, experts and speakers for their excellent contribution, ideas, and their engagement and commitment.
9th European parents’ organisations meeting held in Freising near Munich, Germany
To kick off the event, there was a talk on the patient involvement in research and health policy around pregnancy which emphasised the importance of involving parents in decision making processes in health care policy, research, prevention and ethics. The Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) reported possible ways to support research in preterm birth and the importance of patient involvement. The World Health Organization (WHO) introduced attendees to the WHO research prioritisation project in maternal health. All parents groups were invited to take part in an online-survey to state their priority research interests.
The parents’ organisations meeting was also taken as a chance to evaluate the last World Prematurity Day (WPD) and organisation representatives showcased their local activities. To round up the meeting the public relations agency Weber Shandwick gave a policy and advocacy communication training which will prove valuable for parents organisations to gain momentum in health politics in their respective countries.
The representatives also elected 8 members into the EFCNI Parents’ Advisory Board. The board members, elected for a period of two years, represent the parents’ voice within EFCNI and will be a valuable source of support and advice.
EFCNI would like to cordially thank all participants and presenters of this meeting for the fruitful discussions and exchange of information and ideas as well as their excellent presentations.
8th European parents’ organisations meeting held in Freising near Munich, Germany
In May 2012 EFCNI invited to the 8th European parents’ organisations meeting in Freising. Representatives from 20 European countries and even Canada gathered in order to exchange ideas and experiences, to strengthen the cross border network and to develop joint strategies for newborn health.
The first topic was a conference call with the South African association LittleBigSouls, who gave a short presentation on the difficult situation for preterm babies in Africa and the importance of World Prematurity Day.
Further, EFCNI gave a brief summary on the responses to the global action report on preterm birth “Born Too Soon” which had been supported by EFCNI.
The representatives also discussed in detail common European and global actions for the next World Prematurity Day on 17 November in order to attract high public and media interest for this year’s awareness day.
The parents’ meeting was followed by an inspiring presentation and discussion on how maternal and health care standards can be improved, the importance of having a health care strategy and working in coalitions as well as the appropriate means of communication.
Another highlight was the presentation and workshop given by Weber Shandwick, a leading global public relations agency. In the end the participants could take home valuable ideas and input on how to use healthcare policy trends to build a coalition and how to use the EFCNI White Paper and Call to Action for their national work.
EFCNI would like to cordially thank all participants and presenters of this meeting for their valuable advice and support as well as their excellent presentations.
6th European parents’ organisations meeting held in Freising near Munich, Germany
Again, many organisations across Europe followed EFCNI’s invitation to this spring’s parents’ organisations meeting. For the first time, many representatives from the Eastern European countries were able to join the group to exchange ideas and build a cross border network for newborn health. Visitors from Canada and Middle East gained a first insight into the set-up and functioning of the different associations as well as the huge challenges in Europe. They returned home with many ideas for a set-up of their own group.
The 6th parents’ organisations meeting focussed on the opportunities arising from a trustful cooperation between parents and health professionals as well as on the important work of volunteers. Preparations for this year’s joint event on the first World Prematurity Day started and will now accompany us as one main project throughout the next months to come.
EFCNI sincerely thanks all participants for their valuable work and input. Thank you to the presenters of this meeting for their brilliant presentations and inspiring ideas.
5th European parents’ organisations meeting held in Freising near Munich, Germany
Fourteen different nations gathered in Freising, Germany, end of November 2010 for the fifth European parents’ organisations meeting to exchange information and to work on next steps in their common fight against prematurity in Europe.
The meeting started with a very interesting and inspiring presentation on the March of Dimes NICU family support system. On this occasion, we would like to warmly thank Judith Gooding, Liza Cooper and Phyllis Williams-Thompson for their time during their Thanksgiving holidays.
Prof. Dr. Jacques Sizun as representative of NIDCAP (Newborn Individualized Developmental Care and Assessment Program) gave a valuable insight into this excellent programme devised for preterm infants in order to ensure their best possible outcome.
Last but not least, Antje Otto from the after care program Bunter Kreis based in Augsburg, Germany, presented an overview on their programme which has meanwhile been adopted by many hospitals throughout Germany.
Another major topic during this parents’ organisations meeting was the decision on the organisation of the next Prematurity Awareness Day which will be held on November 17, 2011 in cooperation with the US-organisation March of Dimes, Little Big Souls from Africa and and the Australian National Premmie Foundation. The representatives agreed on one joint activity all across Europe for this special first World Prematurity Awareness Day. Highlight of this first World Prematurity Awareness Day will be a common meeting and event in Brussels.
The representatives elected seven members into the newly established EFCNI Parents’ Advisory Board. The board members, elected for a period of two years, represent the parents’ voice within EFCNI and will be a valuable souce of support and advice.
3rd European parents’ organisations meeting
This third meeting took place end of November 2009 in Brussels, Belgium. Main focus was the preparation of the EU Benchmarking Report and a presentation of possibilities and opportunities to use the data of the report on a national level.
An important highlight of the meeting was a reception at the Bavarian Representation. On this occasion, the 2009 CaPaNi Award was given to Prof. Dr. Mario Rüdiger, Neonatology/Pediatric Intensive Medicine department at the Carl Gustav Carus University Clinic in Dresden, where Prof. Rüdiger and his team conduct research into preventive measures and treatments against chronic lung disease.
2nd European parents’ organisations meeting supported by Prof. Dr Angelika Niebler, member of the European Parliament
EFCNI continues its cooperation with 17 European parents’ organisations for preterm infants and newborn infants with illnesses: EFCNI which was founded just one year ago in Munich/Germany, recently held its second European meeting with national parents’ representatives in Freising near Munich following up on the success of the first meeting of European parents’ organisations in Rome in November 2008.
Major topic during the second parents’ organisations meeting from May 1-3 were the preparations for the first Prematurity Awareness Day which will be held on November 17, 2009 in cooperation with the US-organisation March of Dimes and the Australian organisation Austprem.
MEP Prof. Dr Angelika Niebler who at the beginning of the year had received a catalogue of demands drawn up at the first parents’ organisation meeting in Rome, made a visit to the second meeting of European Parents’ Organisations. The parents’ representatives were able to exchange opinions with Dr Niebler about the foundation’s health policy work. “The largest children patient group still receives little support from the EU. I would like to change this and will support the call for more attention to preterm infants and newborn infants with illnesses on a European level”, says Dr Niebler.
25 representatives from 18 nations meet in Rome on November 17th/18th
From Sweden to Italy, from Portugal to Turkey, the representatives discussed a joint declaration. There was great unity among the participants at Rome on a number of issues ranging from a European-wide introduction of a prolonged maternity leave for parents of premature babies to the psychological and social care of parents at the neonatal ward and social-medical aftercare for families with preterm infants and newborn infants with illnesses.