ABOUT BARD
At the beginning of the 2000s, the interdisciplinary MHH working group 'Biliary Atresia' intensified both its clinical and basic research.
At the beginning of the 2000s, the interdisciplinary MHH working group "Biliary Atresia" intensified both its clinical and basic research. This also included the establishment of a European patient registry (EBAR - European Biliary Atresia Registry), which was presented at the first international congress in Hanover in 1999 and evaluated seven years later. This revealed differences in treatment and results at national and international level and confirmed the need for an Internet-based registry. However, this would only make sense if the data could also be used to improve treatment.
In the following years, the working group expanded its objectives and gave itself the acronym "BARD" (Biliary Aresia and Related Diseases). Under this title, a website was established that offered a decentralized patient registry that could be used worldwide. An executive board represented the disciplines of pediatric and transplant surgery, pediatric hepatology and various basic researchers.
BARD
- whence and whither
The response to our BARD activities has always been positive and encouraging. The organisers therefore felt compelled to transform our self-established platform into a legally correct professional association and to professionalise its online presence.
The new EBAR strategy is adapted to the ERN-rare-liver, but focusses exclusively on neonatal cholestatic liver diseases. Clinical and patient-orientated topics will take centre stage and be available for discussion by professionals and patients. In addition, clinical and basic research will be a further focus, with young researchers in particular being motivated by the announcement of BARD and JCM prizes.
It should be noted that BARD is not intended to compete with existing organisations and/or established congresses. However, the aim is to become part of these events, e.g. by organising a BARD session on a specific topic. Regardless of this, the series of BARD conferences will continue.
The new perspective of BARD and its new website is to encourage interactive participation. This means, for example, that both colleagues and patients are invited to optimise and update the worldwide list of reference centres. Suggestions for the "Paper of the Month" are to be contributed by users of the website, and patients or their relatives in particular are invited to discuss clinical and social issues, including criticism and suggestions. The same applies to anyone who would like to initiate virtual meetings and webinars and suggest topics for upcoming scientific events.
OUR
MISSION
The response to our BARD activities has always been positive and encouraging. The organisers therefore felt compelled to transform our self-established platform into a legally correct professional association and to professionalise its online presence.
The new EBAR strategy is adapted to the ERN-rare-liver, but focusses exclusively on neonatal cholestatic liver diseases. Clinical and patient-orientated topics will take centre stage and be available for discussion by professionals and patients. In addition, clinical and basic research will be a further focus, with young researchers in particular being motivated by the announcement of BARD and JCM prizes.
It should be noted that BARD is not intended to compete with existing organisations and/or established congresses. However, the aim is to become part of these events, e.g. by organising a BARD session on a specific topic. Regardless of this, the series of BARD conferences will continue.
The new perspective of BARD and its new website is to encourage interactive participation. This means, for example, that both colleagues and patients are invited to optimise and update the worldwide list of reference centres. Suggestions for the "Paper of the Month" are to be contributed by users of the website, and patients or their relatives in particular are invited to discuss clinical and social issues, including criticism and suggestions. The same applies to anyone who would like to initiate virtual meetings and webinars and suggest topics for upcoming scientific events.
PARTNERS
BARD collaborates with leading medical institutions, research organizations, and advocacy groups to drive progress in the field of Biliary Atresia. Together, we work towards advancing knowledge, developing innovative therapies, and providing comprehensive support for patients and families affected by this condition.
