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2014 01 21 minutes parents meeting (1)


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European foundation for the care of newborn infants (EFCNI) meeting, February 2014

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2014 01 21 minutes parents meeting (1)

  1. 1. Minutes 10th Parents’ Organisation Meeting Freising, Germany Friday, 14 February 2014– Sunday, 16 February 2014 Friday, 14 February 2014 Agenda Topic Summary Welcome and short introduction Why corporate identity – What is the miracle of Coca Cola and Co? Presentation will follow Key findings: (Claudia Büring, Dräger) Importance to send out the same message over years and repeatedly/constantly Examples: - Changing the logo purple for WPD; - Framing activities in purple - Put purple sock in the logo for WPD For global approaches work with purple colour to be recognised as part of a bigger movement of prematurity. To Do: EFCNI will contact the Down Syndrome Day to invite them joining the idea of World Prematurity Day, as this group also uses socks to promote their cause Minutes and presentations 10th parents organisations meeting, 14 – 16 February 2014, Freising, Germany
  2. 2. Agenda Topic The power of social media and the benefit for NGOs Summary Presentation will follow Key findings: (Raphaela Maurer, EFCNI / Claudia Büring, Dräger) Importance of using # Concentrate on a few Social Media channels so that the workload can be handled. The most widely used channels: Facebook, Twitter, Linked-In Interact between the different channels to keep workload low – for example twitter the headline of your facebook post. Connect the different channels to each other if possible Share messages and posts amongst each other to promote the topic maternal and newborn health/ preterm birth For the next time: the groups will think about common messages to be shared in a structured way Evening reception: WPD presentations of the groups – see presentation (attention please: document heavy to download, might take some minutes) Following the request of some organisations, please find here the link to the WPD video “Give a hug” from BLISS Minutes and presentations 10th parents organisations meeting, 14 – 16 February 2014, Freising, Germany
  3. 3. Saturday, 15 February 2014 Agenda Topic Educating and informing national Members of Parliament on maternal and newborn health Summary Presentation will follow (Neil Datta, European Parliamentary Forum on Population and Development) SOCKS FOR LIFE Campaign outlook 2014 See presentation (Silke Mader, EFCNI) The artwork gathered for SOCKS FOR LIFE will be exhibited in the European Parliament for one week as of 7 April. Artwork can be added to the exhibition till beginning of March. Please contact EFCNI if you will still receive artwork for the exhibition. An invitation to the opening event will be sent out shortly. The groups are warmly requested to share the invitation with their professionals and policy-makers, in particular their Members of the European Parliament. The parents representatives are warmly invited to join the opening event. Unfortunately, EFCNI cannot take over the funding of the travel or accommodation. On the occasion of the exhibition opening, the total number of votes for the European Call to Action for Newborn Health will be handed over to European policy-makers. The groups agreed to make one last effort to collect votes for the European Call to Action for Newborn Health till shortly before the launch event in the Parliament (beginning of April) – our aim would be to receive 20.000 votes. The hand-over ceremony will be the opportunity to launch the project of European harmonized standards of Care for Newborn Health. The parents organisations are invited to endorse the project of developing standards with their logos. Invitation e-mail will follow soon. (See also agenda topic standards of care) Minutes and presentations 10th parents organisations meeting, 14 – 16 February 2014, Freising, Germany
  4. 4. Agenda Topic Summary World Prematurity Day (WPD) strategy 2014 See presentation (Silke Mader, EFCNI) The group decided to be consistent with logo and colour over the next years so that the public will recognize prematurity at one glance. The group agreed to have one common socks line image for WPD. It was agreed that we need a colour not only for the day – but as a campaign colour for prematurity: purple (see above). Common activities for 2014 will be the lightening and the socks line EFCNI will provide and share: - Toolkits for lightening, for events (to the public) - WPD poster 2014 (32 languages)* - Factsheet about WPD and its impact (to EFCNI partners only) - EFCNI recommendation letter (to EFCNI partners only) - Press release in English (to EFCNI partners only) to be translated into the different languages by the groups WPD poster 2014: The groups decided on the layout of the next poster (1 baby in 10 is born premature.Worldwide.) which will be made in a neutral design. This agreed –upon design will become the poster for the following WPDs. The poster is currently under licensing process and will be shared around summer with the groups. Minutes and presentations 10th parents organisations meeting, 14 – 16 February 2014, Freising, Germany
  5. 5. Agenda Topic Summary European Standards of Care See presentation (Nicole Thiele, EFCNI) The parents groups will be an important part of the working groups to develop common standards... The parents groups are encouraged to participate in the working groups. Necessary time to invest: about 5 - 10 hours per month; work will mostly be coordinated by mail and phone calls; 1 – 2 personal meetings might be necessary; these will be coordinated by the working groups with the help of EFCNI; All work will be done on a volunteer basis, travel costs will be paid; An invitation mail will be sent out to all partnering parents groups with the request to feedback to EFCNI if there is an interest to participate in a working group for the development of the standards. EFCNI will discuss with the Chairs (renowned experts in their field) how the working group will be composed. However, the Chairs will have the final decision about the members in their working group. Another mail will be sent out asking all partnering parents groups to provide their name and logo to endorse the need to create harmonized European standards. At a later stage, the groups will be requested to support the standards project and the standards developed with their name and logo on the official project website. The logos to endorse the development of standards will be placed on the first official roll-up to launch the project in the European Parliament on 7 April. Healthy Pregnancy Campaigning See presentation (Stephanie Polus, EFCNI) If you are interested in using the brochure “Gesund schwanger” and translate the text for use in your country, please contact EFCNI. Minutes and presentations 10th parents organisations meeting, 14 – 16 February 2014, Freising, Germany
  6. 6. Agenda Topic Workshop on sensbilisation for the needs of NICU families (Charlotte Bouvard, Stéphanie ISAIA, SOS Préma ) Code of Conduct Partnership between industry partners and patient representatives (Nicole Thiele, EFCNI) Summary See presentation For more details and if you are interested to start a workshop on sensibilisation about needs of NICU families with healthcare professionals in your region, please contact SOS Préma directly or through EFCNI: SOS Préma will be happy to share their experiences. Please refer to the documents - Code of Conduct (EFCNI Website) Policy of Acceptance (EFCNI Website) International Code of Marketing of Breast-milk Substitutes (English, French, Russian) EFPIA Code of Practice on Relationship between the Pharmaceutical Industry and Patient Organisations Don’t hesitate to contact EFCNI by mail or by phone if you have questions or feedback or seek advice. Evening event: Presentations regarding the introduction to the work in Australia, Canada, Mexico will follow. Minutes and presentations 10th parents organisations meeting, 14 – 16 February 2014, Freising, Germany
  7. 7. Sunday, 16 February 2014 Agenda Topic Summary Every Newborn Action Plan See presentation Severin von Xylander (WHO) Nathalie Likhite (PMNCH) The draft of the Every Newborn Action Plan – a global movement with the goal of ending preventable deaths among mothers and children (newborns) - is open for consultation. WHO, PMNCH and EFCNI strongly request the parents groups to take the time to respond to the consultation: this is the first time individuals and groups involved in maternal and newborn health can give their feedback and recommendations for a global movement. A true chance also for the parents to become part of the global movement, and raise their voice to demand increased action in their country. The consultation is open to the public till 28 February. The Action Plan will then be finalized and will be launched at the UN in New York in May. The groups are also called upon to distribute the information on the consultation amongst their networks and to encourage as many professionals, organisations and stakeholder they know to give feedback . The groups are invited to contact their political network, health ministries and to demand to become more involved in the global movement and to increase activities. WHO and PMNCH currently work in particular on sample material to contact governments and to involve the network for the consultation. The material will be shared through EFCNI mails within the next coming days. Minutes and presentations 10th parents organisations meeting, 14 – 16 February 2014, Freising, Germany
  8. 8. Agenda Topic Fundraising Summary Feedback from the Groups about sources and income Sources: - Government money - Donation - Sponsorship - Volunteers - Sales - Membership fee - In-kind (not in form of money) - Event or Charity fundraising Income: Ranging from 0 to 120.000 Euro amongst European groups More information and documents about this topic will follow in a separate email. Minutes and presentations 10th parents organisations meeting, 14 – 16 February 2014, Freising, Germany