Improve Preterm

Improve Preterm Improving lifelong health and care for babies born very preterm – with families, clinicians, and researchers across Europe.

𝗢𝘂𝘁𝗰𝗼𝗺𝗲𝘀 𝗱𝗼 𝗻𝗼𝘁 𝗵𝗮𝗽𝗽𝗲𝗻 𝗶𝗻 𝗮 𝘃𝗮𝗰𝘂𝘂𝗺. A diagnosis, follow-up recommendation, or clinical description may look clear on pap...
02/09/2026

𝗢𝘂𝘁𝗰𝗼𝗺𝗲𝘀 𝗱𝗼 𝗻𝗼𝘁 𝗵𝗮𝗽𝗽𝗲𝗻 𝗶𝗻 𝗮 𝘃𝗮𝗰𝘂𝘂𝗺. A diagnosis, follow-up recommendation, or clinical description may look clear on paper. But what it means in daily life can depend a lot on the 𝘀𝘂𝗽𝗽𝗼𝗿𝘁, 𝘁𝗶𝗺𝗲, 𝗮𝗰𝗰𝗲𝘀𝘀, 𝗮𝗻𝗱 𝗿𝗲𝘀𝗼𝘂𝗿𝗰𝗲𝘀 𝗮𝗿𝗼𝘂𝗻𝗱 𝗮 𝗳𝗮𝗺𝗶𝗹𝘆. 🌱

For example, two children may receive a similar recommendation for therapy or developmental follow-up. For one family, regular appointments may be easier to manage because they have flexible work hours, reliable transport, nearby services, paid time off, or help with siblings.

For another family, the same recommendation may mean rearranging work shifts, traveling long distances, finding childcare, navigating language barriers, or trying to understand a system that is hard to access. Even when healthcare itself is covered, care still takes time, energy, planning, and knowledge. 🧩 That is why 𝘁𝗵𝗲 𝘀𝗮𝗺𝗲 𝗼𝘂𝘁𝗰𝗼𝗺𝗲 𝗰𝗮𝗻 𝗺𝗲𝗮𝗻 𝗱𝗶𝗳𝗳𝗲𝗿𝗲𝗻𝘁 𝘁𝗵𝗶𝗻𝗴𝘀 𝗶𝗻 𝗿𝗲𝗮𝗹 𝗹𝗶𝗳𝗲.

Clinical descriptions matter. But lived experience helps explain what those descriptions actually mean for families – in routines, stress, support needs, and everyday decisions. 💬 When research looks at outcomes after very preterm birth, that context matters too. It helps show not only what happened, but what it takes for families and children to live with, manage, and respond to it over time. ✨

26/08/2026

𝗙𝗮𝗺𝗶𝗹𝘆 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗺𝗲𝗻𝘁 𝘀𝗵𝗼𝘂𝗹𝗱 𝗳𝗲𝗲𝗹 𝗿𝗲𝘀𝗽𝗲𝗰𝘁𝗳𝘂𝗹, 𝗻𝗼𝘁 𝘀𝘆𝗺𝗯𝗼𝗹𝗶𝗰. 💛 When families and people born preterm contribute to research, they bring much more than an “opinion.” They may bring time, energy, lived experience, memories of care, practical knowledge, and questions they have carried for years.

Sometimes, they may also be asked to share very personal parts of their story, for example medical history, difficult experiences in the NICU, emotional stress, trauma, or psychological challenges they may still be working through. That should never be treated lightly. 🤍

𝗠𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗺𝗲𝗻𝘁 𝗺𝗲𝗮𝗻𝘀 𝗿𝗲𝗰𝗼𝗴𝗻𝗶𝘇𝗶𝗻𝗴 𝘄𝗵𝗮𝘁 𝗽𝗲𝗼𝗽𝗹𝗲 𝗮𝗿𝗲 𝗴𝗶𝘃𝗶𝗻𝗴 𝘄𝗵𝗲𝗻 𝘁𝗵𝗲𝘆 𝗰𝗼𝗻𝘁𝗿𝗶𝗯𝘂𝘁𝗲. It means clear expectations before a meeting or workshop. It means accessible information, enough time to prepare, and no pressure to share more than someone chooses. It means respecting that one parent, family, or person born preterm cannot speak for everyone. And it means following up so people know how their input was used. 🌱

Families can offer powerful insight without having to expose every painful part of their story. That is why 𝗿𝗲𝘀𝗽𝗲𝗰𝘁𝗳𝘂𝗹 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗺𝗲𝗻𝘁 matters. Family voices should not be included only to show that families were present. They should be invited in ways that value people’s time, knowledge, boundaries, and lived experience – and allow their input to shape the work. ✨

𝗠𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹 𝗳𝗮𝗺𝗶𝗹𝘆 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗺𝗲𝗻𝘁 does not happen by accident. It has to be 𝗯𝘂𝗶𝗹𝘁 𝗶𝗻𝘁𝗼 𝘁𝗵𝗲 𝗽𝗿𝗼𝗷𝗲𝗰𝘁 𝘀𝘁𝗿𝘂𝗰𝘁𝘂𝗿𝗲 structure from ...
19/08/2026

𝗠𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹 𝗳𝗮𝗺𝗶𝗹𝘆 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗺𝗲𝗻𝘁 does not happen by accident. It has to be 𝗯𝘂𝗶𝗹𝘁 𝗶𝗻𝘁𝗼 𝘁𝗵𝗲 𝗽𝗿𝗼𝗷𝗲𝗰𝘁 𝘀𝘁𝗿𝘂𝗰𝘁𝘂𝗿𝗲 structure from the start. 💛

In IMPROVE PRETERM, parent and patient voices are structurally woven into the project through 𝘁𝗵𝗲 𝗣𝗮𝗿𝗲𝗻𝘁 𝗮𝗻𝗱 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗔𝗱𝘃𝗶𝘀𝗼𝗿𝘆 𝗕𝗼𝗮𝗿𝗱, the PPAB. The PPAB brings together parents of children born preterm and people born preterm themselves. Their role is not only to be informed about the project from the sidelines. They are involved in the work 𝗮𝘀 𝗮𝗰𝘁𝗶𝘃𝗲 𝗰𝗼𝗻𝘁𝗿𝗶𝗯𝘂𝘁𝗼𝗿𝘀. 🌱

That can mean joining project meetings, taking part in workshops, commenting on communication materials, giving feedback on tools such as questionnaires, or helping researchers reflect on which outcomes should not be overlooked.

For example, PPAB members have already contributed to discussions on 𝗖𝗼𝗿𝗲 𝗢𝘂𝘁𝗰𝗼𝗺𝗲 𝗦𝗲𝘁𝘀 – shared sets of outcomes that help define what research should measure. Their perspectives can help make sure those discussions stay connected to what matters in everyday life, long-term follow-up, and the experiences of families and people born very preterm. 💬

This is one way IMPROVE PRETERM works to make family involvement meaningful: not as a single moment of feedback, but as 𝗽𝗮𝗿𝘁 𝗼𝗳 𝘁𝗵𝗲 𝗽𝗿𝗼𝗷𝗲𝗰𝘁 𝗽𝗿𝗼𝗰𝗲𝘀𝘀 𝗼𝘃𝗲𝗿 𝘁𝗶𝗺𝗲. ✨

Learn more on our website: https://improve-preterm.eu/who-we-are/ppab/

𝗠𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗺𝗲𝗻𝘁 𝗶𝘀 𝗱𝗲𝘀𝗶𝗴𝗻𝗲𝗱, 𝗻𝗼𝘁 𝗮𝘀𝘀𝘂𝗺𝗲𝗱. 💛 Most people would agree that family perspectives should be part of re...
12/08/2026

𝗠𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗺𝗲𝗻𝘁 𝗶𝘀 𝗱𝗲𝘀𝗶𝗴𝗻𝗲𝗱, 𝗻𝗼𝘁 𝗮𝘀𝘀𝘂𝗺𝗲𝗱. 💛 Most people would agree that family perspectives should be part of research into life after very preterm birth. But meaningful involvement does not happen automatically just because families are invited into a meeting, asked to review a document, or included in a project structure. 𝗜𝘁 𝗵𝗮𝘀 𝘁𝗼 𝗯𝗲 𝗯𝘂𝗶𝗹𝘁 𝗶𝗻𝘁𝗼 𝘁𝗵𝗲 𝘄𝗼𝗿𝗸 𝗳𝗿𝗼𝗺 𝘁𝗵𝗲 𝘀𝘁𝗮𝗿𝘁. 🌱

That means families need 𝗰𝗹𝗲𝗮𝗿 𝗶𝗻𝗳𝗼𝗿𝗺𝗮𝘁𝗶𝗼𝗻 about what they are being asked to contribute to, for example a research question, a questionnaire, an outcome list, a communication text, or a follow-up tool. It also means they need enough 𝘁𝗶𝗺𝗲, 𝗮𝗰𝗰𝗲𝘀𝘀𝗶𝗯𝗹𝗲 𝗹𝗮𝗻𝗴𝘂𝗮𝗴𝗲, 𝗮𝗻𝗱 𝗿𝗲𝗮𝗹 𝗼𝗽𝗽𝗼𝗿𝘁𝘂𝗻𝗶𝘁𝗶𝗲𝘀 to shape the work before decisions are already made. Family input is most meaningful when it can still 𝗶𝗻𝗳𝗹𝘂𝗲𝗻𝗰𝗲 𝘄𝗵𝗮𝘁 𝗵𝗮𝗽𝗽𝗲𝗻𝘀 𝗻𝗲𝘅𝘁. 💬

And just as important: researchers need to circle back. What changed because of family feedback? What could not be changed, and why? What still needs more discussion? That 𝗳𝗲𝗲𝗱𝗯𝗮𝗰𝗸 𝗹𝗼𝗼𝗽 helps make family involvement a 𝗰𝗼𝗻𝘃𝗲𝗿𝘀𝗮𝘁𝗶𝗼𝗻 – not a one-time request for input. 🧩

When family perspectives are woven into the structure of a project from the beginning, they can help research ask better questions, develop more useful tools, and stay connected to what matters in everyday life. ✨

𝗕𝗲𝗶𝗻𝗴 𝗮𝘀𝗸𝗲𝗱 𝗮𝗻𝗱 𝗯𝗲𝗶𝗻𝗴 𝗺𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹𝗹𝘆 𝗶𝗻𝗰𝗹𝘂𝗱𝗲𝗱 𝗮𝗿𝗲 𝗻𝗼𝘁 𝘁𝗵𝗲 𝘀𝗮𝗺𝗲 𝘁𝗵𝗶𝗻𝗴! Families may be invited to contribute in many ways: ...
05/08/2026

𝗕𝗲𝗶𝗻𝗴 𝗮𝘀𝗸𝗲𝗱 𝗮𝗻𝗱 𝗯𝗲𝗶𝗻𝗴 𝗺𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹𝗹𝘆 𝗶𝗻𝗰𝗹𝘂𝗱𝗲𝗱 𝗮𝗿𝗲 𝗻𝗼𝘁 𝘁𝗵𝗲 𝘀𝗮𝗺𝗲 𝘁𝗵𝗶𝗻𝗴! Families may be invited to contribute in many ways: by joining an advisory board, commenting on a questionnaire, sharing what follow-up feels like, reviewing information materials, joining a meeting, or explaining which outcomes matter in daily life. All of that can be valuable. 🌱

But 𝗺𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗺𝗲𝗻𝘁 is not just a one-way request for input. It becomes meaningful when that input is part of an 𝗼𝗻𝗴𝗼𝗶𝗻𝗴 𝗰𝗼𝗻𝘃𝗲𝗿𝘀𝗮𝘁𝗶𝗼𝗻: when researchers listen, work with what families have shared, come back with what they understood, and discuss what should happen next. 💬

For example, family feedback might help make a questionnaire easier to understand, show that a research outcome is too narrow, highlight questions families are still missing answers to, or change how project information is explained. It can also help researchers notice when something that looks simple on paper may feel complicated in everyday care. 🧩

𝗜𝗻 𝘀𝗵𝗼𝗿𝘁, 𝗳𝗮𝗺𝗶𝗹𝘆 𝗶𝗻𝘃𝗼𝗹𝘃𝗲𝗺𝗲𝗻𝘁 𝗯𝗲𝗰𝗼𝗺𝗲𝘀 𝗺𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹 𝘄𝗵𝗲𝗻 𝗶𝘁 𝗶𝘀 𝗻𝗼𝘁 𝗮 𝗼𝗻𝗲-𝘄𝗮𝘆 𝗿𝗲𝗾𝘂𝗲𝘀𝘁 𝗳𝗼𝗿 𝗶𝗻𝗽𝘂𝘁, 𝗯𝘂𝘁 𝗮𝗻 𝗼𝗻𝗴𝗼𝗶𝗻𝗴 𝗰𝗼𝗻𝘃𝗲𝗿𝘀𝗮𝘁𝗶𝗼𝗻 𝘁𝗵𝗮𝘁 𝘀𝗵𝗮𝗽𝗲𝘀 𝘄𝗵𝗮𝘁 𝗵𝗮𝗽𝗽𝗲𝗻𝘀 𝗻𝗲𝘅𝘁. That kind of conversation takes time, trust, and follow-up. And it is one way research can stay closer to the lives it hopes to support. 🤍✨

𝗟𝗶𝘀𝘁𝗲𝗻𝗶𝗻𝗴 𝗶𝘀 𝗽𝗮𝗿𝘁 𝗼𝗳 𝗯𝗲𝘁𝘁𝗲𝗿 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵. 💛 In very preterm care, research needs strong data, careful methods, and clinical ...
29/07/2026

𝗟𝗶𝘀𝘁𝗲𝗻𝗶𝗻𝗴 𝗶𝘀 𝗽𝗮𝗿𝘁 𝗼𝗳 𝗯𝗲𝘁𝘁𝗲𝗿 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵. 💛 In very preterm care, research needs strong data, careful methods, and clinical expertise. But it also needs the perspectives of families and people born very preterm themselves because they can help show what research findings may mean in daily life.

That can be very practical. For example, families may help research understand whether an outcome affects follow-up appointments, therapy needs, breathing or feeding support, school readiness, emotional wellbeing, or how much coordination is needed between different services. They may also show where information is missing, where care routines feel hard to manage, or where support does not fully match what life is like at home. 🌱

This matters because research does not only shape what we know. Over time, it can also influence what healthcare professionals pay attention to, which follow-up questions are asked, which tools are developed, and how care pathways are designed.

𝗪𝗵𝗲𝗻 𝗽𝗮𝘁𝗶𝗲𝗻𝘁 𝗮𝗻𝗱 𝗳𝗮𝗺𝗶𝗹𝘆 𝗽𝗲𝗿𝘀𝗽𝗲𝗰𝘁𝗶𝘃𝗲𝘀 𝗮𝗿𝗲 𝗶𝗻𝗰𝗹𝘂𝗱𝗲𝗱, 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗰𝗮𝗻 𝗯𝗲𝗰𝗼𝗺𝗲 𝗺𝗼𝗿𝗲 𝗰𝗼𝗻𝗻𝗲𝗰𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝗹𝗶𝘃𝗲𝘀 𝗶𝘁 𝗶𝘀 𝗺𝗲𝗮𝗻𝘁 𝘁𝗼 𝘀𝘂𝗽𝗽𝗼𝗿𝘁 – not only in theory, but in the routines, decisions, and questions that shape everyday care. ✨ That is why family voices matter in IMPROVE PRETERM.

22/07/2026

𝗙𝗮𝗺𝗶𝗹𝗶𝗲𝘀 𝗯𝗿𝗶𝗻𝗴 𝘀𝗼𝗺𝗲𝘁𝗵𝗶𝗻𝗴 𝗶𝗺𝗽𝗼𝗿𝘁𝗮𝗻𝘁 𝘁𝗼 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗰𝗼𝗻𝘃𝗲𝗿𝘀𝗮𝘁𝗶𝗼𝗻𝘀: 𝘁𝗵𝗲 𝘄𝗶𝗱𝗲𝗿 𝗽𝗶𝗰𝘁𝘂𝗿𝗲. 💛

After very preterm birth, families often move across many different moments: the NICU, follow-up appointments, home, daycare or school, different services, and later stages of childhood. Each setting may show one part of the journey. But families often carry the connections between them.
That perspective matters. “LIFT-UP Preterm”

Family voices can help research understand not only what happened, but 𝘄𝗵𝗮𝘁 𝗶𝘁 𝗺𝗲𝗮𝗻𝘁 𝗶𝗻 𝗲𝘃𝗲𝗿𝘆𝗱𝗮𝘆 𝗹𝗶𝗳𝗲. How did support feel over time? What questions stayed important? Which outcomes mattered beyond one appointment or one test result? Where did care feel connected, and where did families have to hold the pieces together themselves? 🌱 For people born very preterm themselves, that perspective can reach even further, into adolescence and adulthood.

This is why family voices are part of IMPROVE PRETERM. They help 𝗸𝗲𝗲𝗽 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗴𝗿𝗼𝘂𝗻𝗱𝗲𝗱 𝗶𝗻 𝗿𝗲𝗮𝗹 𝗹𝗶𝗳𝗲 – and connected to the people whose lives it is meant to support. ✨

Research is stronger when it stays connected to real life. That is one reason 𝗳𝗮𝗺𝗶𝗹𝗶𝗲𝘀 𝗵𝗲𝗹𝗽 𝘀𝗵𝗮𝗽𝗲 𝗜𝗠𝗣𝗥𝗢𝗩𝗘 𝗣𝗥𝗘𝗧𝗘𝗥𝗠. 💛 In ...
15/07/2026

Research is stronger when it stays connected to real life. That is one reason 𝗳𝗮𝗺𝗶𝗹𝗶𝗲𝘀 𝗵𝗲𝗹𝗽 𝘀𝗵𝗮𝗽𝗲 𝗜𝗠𝗣𝗥𝗢𝗩𝗘 𝗣𝗥𝗘𝗧𝗘𝗥𝗠. 💛 In this project, family and patient perspectives are part of the work through the 𝗣𝗮𝗿𝗲𝗻𝘁 𝗮𝗻𝗱 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗔𝗱𝘃𝗶𝘀𝗼𝗿𝘆 𝗕𝗼𝗮𝗿𝗱, the PPAB.

The PPAB brings together people with lived experience of very preterm birth. Their role is not just to observe the project from the outside. They help make sure the research stays connected to what matters in everyday life, over time, and across different stages of the journey. 🌱

That can include helping the project reflect on what questions matter most, what kinds of outcomes should not be overlooked, and how tools, communication, and research stay meaningful for families and people born very preterm themselves.

𝗜𝗻 𝗼𝘁𝗵𝗲𝗿 𝘄𝗼𝗿𝗱𝘀: 𝗳𝗮𝗺𝗶𝗹𝗶𝗲𝘀 𝗮𝗿𝗲 𝗻𝗼𝘁 𝗼𝗻𝗹𝘆 𝗽𝗮𝗿𝘁 𝗼𝗳 𝘁𝗵𝗲 𝘀𝘁𝗼𝗿𝘆 𝘁𝗵𝗶𝘀 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗶𝘀 𝗮𝗯𝗼𝘂𝘁 – 𝘁𝗵𝗲𝘆 𝗮𝗹𝘀𝗼 𝗵𝗲𝗹𝗽 𝘀𝗵𝗮𝗽𝗲 𝗵𝗼𝘄 𝘁𝗵𝗮𝘁 𝘀𝘁𝗼𝗿𝘆 𝗶𝘀 𝘂𝗻𝗱𝗲𝗿𝘀𝘁𝗼𝗼𝗱. ✨

Learn more on our website: https://improve-preterm.eu/who-we-are/ppab/

𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗼𝘂𝘁𝗰𝗼𝗺𝗲𝘀 𝗺𝗮𝘁𝘁𝗲𝗿 𝗱𝗲𝗲𝗽𝗹𝘆. 💛 They help researchers and healthcare professionals understand important things after ...
08/07/2026

𝗖𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗼𝘂𝘁𝗰𝗼𝗺𝗲𝘀 𝗺𝗮𝘁𝘁𝗲𝗿 𝗱𝗲𝗲𝗽𝗹𝘆. 💛 They help researchers and healthcare professionals understand important things after very preterm birth: survival, medical complications, breathing, development, growth, and many other parts of health.

𝗕𝘂𝘁 𝗰𝗹𝗶𝗻𝗶𝗰𝗮𝗹 𝗼𝘂𝘁𝗰𝗼𝗺𝗲𝘀 𝗮𝗿𝗲 𝗻𝗼𝘁 𝗮𝗹𝘄𝗮𝘆𝘀 𝘁𝗵𝗲 𝘄𝗵𝗼𝗹𝗲 𝗽𝗶𝗰𝘁𝘂𝗿𝗲. A result can be medically important and still leave families with questions about what it means in everyday life. How much support is needed over time? How does a child participate at home, in school, or with others? What does this mean for emotional wellbeing, independence, or daily routines as life moves forward? 🌱

That is why research needs to look beyond clinical outcomes alone. 𝗔 𝗴𝗼𝗼𝗱 𝗼𝘂𝘁𝗰𝗼𝗺𝗲 𝘀𝗵𝗼𝘂𝗹𝗱 𝗻𝗼𝘁 𝗼𝗻𝗹𝘆 𝗯𝗲 𝗺𝗲𝗱𝗶𝗰𝗮𝗹𝗹𝘆 𝗺𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹 – 𝗶𝘁 𝘀𝗵𝗼𝘂𝗹𝗱 𝗮𝗹𝘀𝗼 𝗯𝗲 𝗺𝗲𝗮𝗻𝗶𝗻𝗴𝗳𝘂𝗹 𝗶𝗻 𝗿𝗲𝗮𝗹 𝗹𝗶𝗳𝗲. Families and people born very preterm can help show what those outcomes mean beyond the chart, beyond one appointment, and beyond the early years.

That wider view can help research become more useful for care, follow-up, and the long journey after very preterm birth. ✨

𝗙𝗮𝗺𝗶𝗹𝗶𝗲𝘀 𝗼𝗳𝘁𝗲𝗻 𝘀𝗲𝗲 𝘁𝗵𝗲 𝗰𝗼𝗻𝗻𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗯𝗲𝘁𝘄𝗲𝗲𝗻 𝗺𝗼𝗺𝗲𝗻𝘁𝘀. 💛 After very preterm birth, so much happens across time – different ...
01/07/2026

𝗙𝗮𝗺𝗶𝗹𝗶𝗲𝘀 𝗼𝗳𝘁𝗲𝗻 𝘀𝗲𝗲 𝘁𝗵𝗲 𝗰𝗼𝗻𝗻𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗯𝗲𝘁𝘄𝗲𝗲𝗻 𝗺𝗼𝗺𝗲𝗻𝘁𝘀. 💛 After very preterm birth, so much happens across time – different appointments, different services, different stages of development, and everyday life in between. A single appointment or form can capture something important, but it may not show 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹 𝗽𝗶𝗰𝘁𝘂𝗿𝗲.

Families may notice when support changes, when the same question comes back later, or when daily life takes more energy, planning, or adaptation than others can easily see. And as children grow, people born very preterm themselves can bring an even longer view of what stays relevant over time. 🌱

That kind of 𝗹𝗶𝘃𝗲𝗱 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝗺𝗮𝘁𝘁𝗲𝗿𝘀 𝗶𝗻 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵. It does not replace research, but it can help research ask better questions. It can help show what outcomes matter in real life, what support is needed over time, and where systems may not yet fully reflect the journey families and people born preterm are living.

This is why family voices are so important in IMPROVE PRETERM. They help keep research connected to real life – not only to data points, but to the experiences behind them. ✨

Adresse

Munich

Webseite

Benachrichtigungen

Lassen Sie sich von uns eine E-Mail senden und seien Sie der erste der Neuigkeiten und Aktionen von Improve Preterm erfährt. Ihre E-Mail-Adresse wird nicht für andere Zwecke verwendet und Sie können sich jederzeit abmelden.

Verknüpfungen

Teilen

Kategorie