RSV Patient network
RSV-PN is a network of parents of children that were hospitalised with RSV infection during infancy. We are committed to increasing public awareness of RSV (Respiratory Syncytial Virus). Furthermore, we are involved in various RSV research projects representing the patient perspective. We use our hands-on experience as parents of RSV patients to make an independent and valuable contribution to the relevance, quality and results of RSV research.
RSV Patient Network wants all parents and carers for children to know about RSV. We feel that RSV belongs right there on the list of childhood diseases that everybody knows. Young parents should be able to assess the risks for their baby, know what preventive measures to take and how to recognise a severe infection in time.
We were all very shocked when our children were hospitalised with a serious viral infection which we had never heard of before. Some of our children had to stay in the intensive care unit on ventilation for several weeks. We did not know what was happening to us and yet RSV infections are very common. During the winter months hospital beds are filled with babies with RSV. It is high time to give more attention to this unknown virus!
- Represent the patient perspective in medical scientific research on RSV. We participate in several advisory committees as independent sounding board for researchers. We represent the patient perspective in scientific research and make sure the voice of the patient is heard in a medical scientific setting via constructive dialogue with researchers.
- Increase general awareness of RSV. We are trying to increase public awareness in many different ways and through various channels with our information activities and materials. During the RSV season we are running a STOP-RSV campaign and actively share news and information through our Facebook page and other communication channels. In order to reach as large an audience as possible we are liaising with organisations involved in child healthcare and relevant patient organisations. The information materials of our STOP-RSV Campaign can be found here.
- Establish an international network of parents of RSV patients. We want to become a strong international network that is well connected to the medical scientific community and other relevant stakeholders in the field of RSV. RSV-PN has contacts with academics, medical professionals, policy makers, public health organisations, pharmaceutical companies and patient organisations.
"STOP RSV" campaign in The Netherlands
RSV Patient Network has developed some information materials for its annual STOP RSV awareness campaign. Every year, at the beginning of RSV season we want to generate extra attention for the virus. We do this by sharing e.g. news items on our Facebook page, but also by distributing flyers and posters to local (child) care providers like nurseries, child health centres and GP offices. These places are frequently visited by young parents and we want to inform them about RSV and make them aware of the potential impact of an infection on new-borns. Furthermore, we have a factsheet which offers most important information about RSV at a glance.
RSV-PN works closely with researchers of Wilhelmina Children’s Hospital in Utrecht (www.hetwkz.nl). This hospital has an active RSV research group led by Professor Louis Bont. They are involved in many medical scientific projects studying prevention and treatment of RSV infections and the virus’ burden of disease on society.
Want to join?
Are you a parent of a child that was hospitalised with RSV and do you want to contribute to raising awareness about RSV or want to participate in medical scientific research in this field as a parent representative, please let us know!