DetectEBV
A community for action
Our ambition
The Epstein-Barr virus (EBV) remains largely unknown to both the general public and health professionals. Very little research has been carried out and very few people have been diagnosed with it, yet it is the cause of many disorders.
Warned by a number of patients diagnosed after a long period of diagnostic delays, we have realised the extent of the lack of knowledge about this virus. Health professionals, researchers and, of course, patients, have decided to work together through this community to raise awareness about EBV.
DetectEBV aims to:
Raise awareness on the importance of detecting and monitoring this virus
which can have a serious impact on our health and the health of our loved ones.
To help caregivers learn new habits
by detecting and monitoring EBV more carefully among their patients.
Helping patients break out of diagnostic delays
the number of EBV-related diseases is constantly increasing.
Involve the scientific community more widely
Our mission
To show the reality of EBV through …
Three main areas to share the multiple realities of the virus and increase its exposure to both patients and health care providers.
Click on each area to learn more
The impact of EBV on human health is a REALITY. DETECTING and monitoring this virus is a NECESSITY.
It is time to change how EBV is addressed to match the impact it has on the lives of so many patients.
A collaborative community
➔ Take part and contribute to spreading awareness about EBV.
➔ To provide an opportunity for researchers to share their scientific findings with us.
➔ To offer care providers the opportunity to share their clinical observations and treatment strategies.
➔ To allow patients to share their stories.
➔ To share informative content in different formats (videos, articles, podcasts via this website and social networks).
➔ Distribute as much as possible these contents to massively engage all stakeholders in support of predictive, preventive and therapeutic medicine.
➔ To bring together patients, caregivers, researchers but also institutions, organisations, politicians to make this cause heard.
We are neither an organisation nor a foundation nor a company nor any other structure. We are a group of people from different backgrounds united around the same cause. We have nothing to sell. Our only purpose is to raise awareness of the impact that EBV has on many lives in order to change medical practices.
Un mouvement participatif
➔ To provide an opportunity for researchers to share their scientific findings with us.
➔ To offer care providers the opportunity to share their clinical observations and treatment strategies.
➔ To allow patients to share their stories.
➔ To share informative content in different formats (videos, articles, podcasts via this website and social networks).
➔ Distribute as much as possible these contents to massively engage all stakeholders in support of predictive, preventive and therapeutic medicine.
➔ To bring together patients, caregivers, researchers but also institutions, organisations, politicians to make this cause heard.
We are neither an organisation nor a foundation nor a company nor any other structure. We are a group of people from different backgrounds united around the same cause. We have nothing to sell. Our only purpose is to raise awareness of the impact that EBV has on many lives in order to change medical practices.
The impact of EBV on human health is a REALITY. DETECTING and monitoring this virus is a NECESSITY.
It is time to change how EBV is addressed to match the impact it has on the lives of so many patients.
#EBVheroes
Our mobilisation is fundamental and our testimonies are indispensable.
There is nothing like listening to us to learn more about our experiences and how to better identify symptoms and detect EBV. We will speak out to exchange with doctors, researchers and other patients, and help EBV management evolve. As actors of our health, we are part of the participative approach of DetectEBV.
We call on all patients and their relatives to add their voice to ours.
We call for EBV detection and surveillance for:
- minimising therapeutic wandering
- reducing the lack of diagnosis
- maximising therapeutic opportunities
Thanks to:
- trained and informed caregivers
- up-to-date scientific advances
Carer
#EBVtrackers
Our role is crucial in the care of patients.
Making our peers aware of the impact of the virus, encouraging them to acquire new reflexes to recognise its symptoms and monitor its evolution throughout life is for us a necessary step in daily medical practice.
We call for EBV detection and surveillance for:
- minimising therapeutic wandering
- reducing the lack of diagnosis
- maximising therapeutic opportunities
Thanks to:
- trained and informed caregivers
- up-to-date scientific advances
- patients taking responsibility for their health
Researchers
#EBVexplorers
Our involvement is crucial.
We are advancing knowledge of EBV and related diseases.
We work every day to develop effective treatments.
We want to share and explain our work and discoveries.
We recommend EBV detection and surveillance as part of:
- predictive, preventive and therapeutic medicine based on scientific and clinical knowledge
Thanks to:
- trained and informed caregivers
- disclosure of scientific advances