Main aims & activities

Tick-borne encephalitis (TBE) is a preventable disease, which has rapidly become a growing public health problem in Europe and other parts of the world. So far no causal treatment is known, but a very efficient and well-tolerated vaccination is available for protection against the disease.

The International Patient Information Board on Tick-Borne Encephalitis = TBE (or FSME in German, standing for Frühsommer-Meningoencephalitis) was founded in April 2006 in a combined effort by the members of the International Scientific Working Group on TBE (www.isw-tbe.info), building on the success of the Austrian TBE patient advocacy group (www.zecken.or.at).

The association was established in order to carry along the Austrian success story fighting TBE/FSME into all the other European countries similarly affected. This ensues primarily through active, targeted educational work, so as to both prevent as many new cases of TBE/FSME as possible in Europe over the years to come, and to inform those afflicted about opportunities for the therapy and rehabilitation for physical, cognitive and mood-related deficits.

Drawn up as a challenge to public institutions and to those responsible for policy in the individual countries has been a pan-European 10-point-action-plan (=catalogue of demand), which is first being introduced in the course of the official launch of this patients’ platform during a press conference in Vienna on April 25th, 2006, and which is intended to raise awareness of TBE/FSME as still being one of the great health policy challenges of the 21st Century.

To summarize the main aims of the patient platform are:

- Education and information about FSME/TBE -   Providing support and services for patients and/or sufferers who have contracted FSME/TBE - Publicly representing the interests of those having the disease - Creating networks and platforms for people afflicted, those close to them and interested parties within Europe - Intensified awareness-raising about TBE/FSME and its consequences, among the general population -   Continuing instruction and training - Medical and sociological research - Supporting local/trans-regional FSME/TBE projects that address not only the treatment of sufferers, but also the enlightenment of healthy people

About the International Scientific Working Group on Tick-Borne Encephalitis (ISW-TBE)

In order to provide an effective contribution to public health in general and, specifically, to encourage the control of TBE, an international effort has now been launched with the aim of alleviating this situation. In 1998, as a first step towards this objective, reputed international experts on TBE created a new body:
The international scientific working group on TBE is composed of internationally recognized scientific experts from endemic countries with extensive personal expertise in the field of TBE and a high level of commitment to improving the regional knowledge of and response to the issue of TBE.

"10-Point Action-Plan" of the International Scientific Working Group on TBE (=Tick Borne Encephalitis = FSME = Frühsommer-Meningoencephalitis)

-		Generate a common European definition on "endemic TBEarea" and "TBE case"
-		Bring TBE area/TBE case definitions to the attentionof national health authorities and international health committees
-		Invest in better diagnostics - investigate each suspected TBE case
-		Harmonise national TBE vaccination schedules
-		Establish European recommendations on TBEvaccination
-		Establish European travellers` recommendations on TBE
-		Increase degree on information on TBE as well as on the severity of the disease in the general population
-		Increase awareness on TBE with local health authorities
-		Implement school vaccination programmes against TBE
-		Strive for public financial support for European TBE projects

About the Austrian Patient Advocacy Group for Tick Victims

Serving as a success story is the Austrian example of fighting FSME/TBE and the establishment of the Austrian Patient Advocacy Group for Tick Victims, which meanwhile is celebrating the 20th anniversary of its existence this year. Even 20 years ago Austria, with over 700 FSME/TBE cases per year, was counted among the most severely affected countries in Europe. Nowadays – thanks to a successful campaign of enlightenment for over 20 years - the annual cases of FSME/TBE number at < 100. The Austrian Patient Advocacy Group for Tick Victims has resolutely contributed to this success as well. For over 20 years it has been supporting sufferers (of TBE and Lyme disease) and those close to them with aid and advice


About the International Patient Information Board on Tick-Borne Encephalitis

The international patient information platform for TBE/FSME “tick victims“ is supposed to be set up as a non-profit association that depends on charitable contributions in order to promote local and trans-regional TBE/FSME projects to the benefit of those afflicted and people close to them, as well in favor of FSME/TBE prevention across all of Europe.

Non-profit association "International Patient Information Board (IPI)" :

Location:
Prof. Dr. Stephan Koren Strasse 10,
2700 Wr. Neustadt, Austria
Contact:
Mag. Andrea Gaugusch
Phone: 0043/2622/26326-333
Email: tickvictims@publichealth.at