Research for a better future!
Every child deserves the chance to live a full life, with care and treatments that meet their needs. Research helps bring that future closer.
ENCA brings the voices of children, young people and families affected by rheumatic and autoinflammatory diseases into research. By working alongside researchers and healthcare professionals, we help ensure that their experiences, questions and priorities shape the work being done.
Explore the projects we are involved in and discover how we are contributing to better care, together:
PHORECAST is a European research project exploring how to improve steroid treatment for children with diseases involving the immune system. It aims to better understand why children respond differently to treatment and why some experience more side effects, helping to guide more personalised care in the future.
Why research matters to us
- For families, research means hope for answers, better treatments and an easier everyday life. It can help us understand why diseases develop, how to recognise them earlier and how to provide care that is safer, more effective and suited to each child.
- The questions that matter go beyond test results. Can a child attend school, spend time with friends and take part in the activities they enjoy? Can treatment cause fewer side effects? How can families feel more informed and supported? We believe research should reflect these everyday priorities alongside medical outcomes.
- The questions that matter go beyond test results. Can a child attend school, spend time with friends and take part in the activities they enjoy? Can treatment cause fewer side effects? How can families feel more informed and supported? We believe research should reflect these everyday priorities alongside medical outcomes.
- Through our involvement in research, ENCA aims to connect scientific expertise with lived experience. We advocate for children, young people and families to be involved from the beginning, helping to shape research questions, study design, information and the way findings are shared.
Together, we can help turn research into improvements that children and families can feel in their daily lives.
