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New website for parents of children with interstitial lung disease – get involved

New website for parents of children with interstitial lung disease – get involved

A website is being developed to provide information for parents and carers of children with interstitial lung disease (chILD), a broad term used for a group of rare lung conditions that can affect babies and children.

The website will include information, videos, support organisations, further resources and updates on the latest global research. It will build on the work of the chILD EU project.

It is being developed with our chILD parent advisory group, whose members are contributing to the European Respiratory Society (ERS) chILD Clinical Research Collaboration (CRC), and healthcare professionals working in this field. Parents from Ireland, Israel, Spain, Germany, UK, USA and Australia are involved. The website will launch in early 2018.

We hope to include more people from other countries on our CRC parent advisory group so that we can build connections and share experiences between countries. Please email Jeanette Boyd if you are a parent of a child with ILD, or an adult who had ILD as a child, and want to get involved to help improve networking, information and research in this field.