Disclaimer
The information on this website is provided by RSV Patient Network for awareness raising purposes only and should not take the place of talking with your doctor or healthcare professional. It should not be used for diagnosing or treating a health problem or disease. If you have any questions about your medical condition, talk to your doctor.
About RSV Patient Network
RSV Patient Network is an initiative of parents of children that were hospitalised with RSV during infancy. Although RSV Bronchiolitis is not a chronic condition, the impact of severe RSV infection on patients and their families is considerable. RSV Patient Network was established to provide (parents of) RSV patients with a platform to meet and exchange experiences and provide them with a source of reliable and easy to understand information about RSV Bronchiolitis.
As a patient network we are committed to raising RSV awareness in Europe. We believe that patient led awareness raising is key to put RSV on the map with the general public.
We are well connected with other stakeholders in the field of RSV, such as scientists, doctors, caregivers, public health organisations, regulatory agencies and pharmaceutical industry. We talk to them about patients’ priorities and concerns, to ensure the patient voice is heard and acted upon.
Mission
It is our mission to raise public awareness about RSV Bronchiolitis acting as the collective voice of RSV patients in Europe. We share our experience as parents of RSV patients to the promotion of better care, treatment and prevention of severe RSV disease.
Activities
RSV Patient Network’s activities focus on:
- establishing a strong international network of (parents of) RSV patients that is well connected to the medical scientific community and other relevant stakeholders in the field of RSV. To this end we seek collaborative partnerships with academics, medical professionals, policy makers, public health organisations, pharmaceutical companies and other patient organisations.
- running RSV awareness campaigns. With information materials and activities we call attention to the significant impact of severe RSV infection on small children, their families and society. Our awareness goal is that everybody should at least have heard about RSV. Every year, at the start of RSV season, we run an awareness campaign. In order to reach as large an audience as possible we liaise with organisations involved in child healthcare and relevant patient organisations. Please, check our social media channels Facebook, Instagram, LinkedIn and our offline materials.
- providing a platform to RSV patients and their families to meet, share experiences and learn about RSV Bronchiolitis by means of our webpage and social media channels.
- participating as patient representatives in RSV research to make sure the voice of the patient is heard in a medical scientific setting via constructive dialogue with researchers. We are involved in various research projects studying prevention and treatment of serious RSV disease.
History
RSV Patient Network was founded in 2016 when the RESCEU Patient Advisory Board identified the lack of a patient organisation representing people that have experienced severe RSV infection. Establishing a patient network was needed to bring (parents) of RSV patients together and to collectively take action in RSV awareness raising in Europe. Through its members, RSV Patient Network is still involved in RESCEU. This connection provides us with access to high-quality and up-to-date information about RSV and puts us in direct contact with the other stakeholders in the field of RSV.
Organisation structure
Under construction…