THE BRAINS FOR BRAIN ONLUS FOUNDATION PROMOTES THE BRAIN AWARENESS WEEK
March 13-19, 2017
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, B4B, has organized the 11th workshop of “Brains for Brain” (www.brains4brain.eu) which will be held at the Holiday Inn, Frankfurt Airport from 29th of March to 1st of April 2017.
Brains for Brain is a research group combining scientists and clinicians working in the fields of blood-brain barrier and neurodegenerative lysosomal storage diseases in order to coordinate research in this area, seek collaborative research grants and improve the therapeutic options for drug delivery to the CNS. The meeting comprises a unique mixture of Clinicians, Scientists, Family and Patient Associations and the Pharmaceutical Companies that are devoted to the understanding and treatment of these orphan diseases and other inherited neurometabolic neurodegenerative diseases.
Particular relevance will be given in the workshop to pathophysiology and translational activity together with the relationships of B4B with important European institutions and international family associations.
The aims of the 11th Meeting of the Brains For Brain Foundation are to discuss:
- Research achievements in the field of neurodegenerative diseases, in particular lysosomal storage disorders (LSDs) at clinical and basic science level and in the field of Blood Brain Barrier;
- New recent advances on natural history and pathophysiology of LSDs;
- Factors which control the entry into the brain of medicines and other therapeutic agents which may be helpful in treating central nervous system disease;
- How B4B and the European Union might collaborate to stimulate interest on research in rare diseases, and specifically we will have a session regarding the vision, the mission and the goals of European Reference Network for hereditary metabolic diseases (MetabERN) which is lead by Maurizio and involves 69 EU nationally certified Healthcare Providers from 18 countries. And we think that B4B will surely play an important role also in this project.
- The role of the industries in driving innovation for new therapeutic approaches for true unmet needs.
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 firmly believes 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.
Stay tuned for more updates