EFCNI 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.

January 2017

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 Alliancehttp://www.inha.ie/, 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


February 2016

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


January 2015

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-Rodzicom from 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.

February 2014

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.

  • Representatives of the 10th parents' organisations meeting

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January 2013

Representatives of the 8th parents' organisations meeting

9th European parents' organisations meeting held in Freising near Munich, Germany

20 different nations gathered in Freising, Germany for the 9th European parents' organisations meeting end of January. The event was also the 5th anniversary of the meetings which was pointed out by Silke Mader in her welcome speech.

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.

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May 2012

Representatives of the 8th parents' organisations meeting

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.

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May 2011

Representatives of the 5th parents' organisations meeting

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.

 

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November 2010

Representatives of the 5th parents' organisations meeting

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.

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May 2010

Parents at the European Parliament

4th meeting of European parents’ organisations for preterm infants and launch of the EU Benchmarking Report

On May 5 and 6 EFCNI and its' partner organisations met in Brussels for their 4th European parents' organisations meeting.

Highlight of the meeting was EFCNI's presentation of the findings of its new EU Benchmarking Report “Too Little, Too Late? Why Europe should do more for preterm infants.” at a policy debate in the European Parliament on May 6, kindly hosted by Dr. Angelika Niebler, Member of the European Parliament. EFCNI and parent associations from across Europe joined leading experts in the field of neonatology, officials from the European Commission and EU Member State Permanent Representations to discuss the current status of EU health and social policies which impact preterm infants and their families.

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November 2009

presentation of the Capani award to Prof Rüdiger

Third 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.

May 2009

Second meeting of European parents’ organisations for preterm infants supported by 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 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.

foto first national parents' organisations meeting in Rome

November 2008

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.

 
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