The RSV Patient Network is a network of parents whose children were hospitalised with RSV infection during infancy. We are committed to increasing public awareness of RSV (Respiratory Syncytial Virus). Most notably in our efforts to achieve this goal, we have established a Patient Advisory Board, where 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.
We strive for global awareness about RSV
RSV Patient Network wants everybody to know about RSV. The virus is known to affect older adults, but the highest burden is in young children, aged below 2 years old. Therefore, 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.
The Patient Network’s goals
To increase general awareness of RSV worldwide
Representing patient perspective in medical scientific research on RSV
To establish an international network of parents and patients
We have our focus on:
Awareness
To create more awareness for all of our target groups via our social media channels, the annual awareness week and our webinars.
Education
We have noticed that young parents and patients have a great need for information about RSV, to know how far science has progressed in the fight against this virus. To meet this need, the RSV Patient Network organises webinars for the general public since December 2019.
Not only for parents and patients, but also for other professionals like General Practitioners (Family doctors), midwives, maternity care, public health organisations, pulmonologists, cardiologists etcetera.
This academic year, we will start giving guest lectures in midwifery training in the Netherlands.
Prevention
This remains the basis. It is notable that RSV infections dramatically decreased with the introduction of COVID-19 and that some of the good habits taught to us through the pandemic can be adopted to help reduce the spread of RSV, such as washing our hands and keeping distance when we are sick.
Join us in our mission
Are you a patient or 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!