Every March, Brain Awareness Week (BAW) unites the efforts of partner organizations worldwide in a week-long celebration of the brain. BAW is a worldwide global campaign promoted by Dana Alliance for Brain Initiatives (Dana Foundation) and European Dana Alliance for the Brain aimed to raise public awareness about the progress and benefits of brain research.
B4B Foundation is one of the official partners of the BAW and every year actively celebrates it joining forces to raise awareness of rare pediatric neurological conditions.
Rare paediatric neurological diseases represent an unknown public health issue in Europe. Overall, there are thousands of rare diseases that affect a large number of people. About four million people in Germany and 30 million in Europe are estimated to suffer under one of 8.000 actually known rare diseases. But their seldom appearance makes it a great challenge for modern medicine. Often, the diseases are multisystemic and there are no main symptoms. Therefore a complex and interdisciplinary collaboration in diagnosis and treatment is necessary.
Given the general lack of knowledge and expertise about these conditions it’s extremely important to promote awareness, among physicians and general public, about these disorders.
To this aim, Brains for Brain Foundation (B4B), in collaboration with the Center for Rare Diseases (CRD) at HSK, Dr. Horst Schmidt Kliniken in Wiesbaden, is organizing awareness-raising activities aimed to reach different audiences and involve them in interactive communication activities about rare diseases, the challenges encountered by those affected, the difficult in getting a final diagnosis, the importance of research to develop diagnostics and treatments, and the impact of these diseases on patients’ lives. The establishment of an open dialogue among patients affected by rare diseases and their families, together with public authorities, researchers, health professionals, industry representatives and anyone who has a genuine interest in rare diseases constitutes an important strategic action for overcoming the knowledge gap in the field of rare diseases. B4B and CRD firmly believe that it is fundamental to manage rare diseases in an expert multidisciplinary setting where research, knowledge and expertise are easily shared, assuring the best health outcomes for each patient.
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