9th Brains for Brain Plenary Workshop and InNerMeD Information Network 2nd Open Conference
The Brains for Brain Foundation (B4B), the organisation leading the Inherited NeuroMetabolic Diseases Information Network (InNerMeD-I-Network) project, has recently organised the 9th B4B Workshop and InNerMeD-I-Network 2nd Open Conference, jointly held in Frankfurt, at the Mercure Hotel, on February 5th – 7th, 2015. This 9th edition brought together more than 80 participants. The constantly increasing number of participants that every year attend the annual Symposium is a sign of the increasing awareness of the importance of interdisciplinary dialogue among experts working in the field of iNMDs. Moreover, the active participation of new and old attendees, seriously committed to combine their forces and their scientific experiences, is a proof of evidence of the successful networking activity performed by the Brains for Brain International Foundation on behalf of all InNerMeD-I-Network participants.
The meeting was aimed to enable the exchange of information among clinicians, basic scientists and experts specialised in inherited neurometabolic diseases (iNMDs), pharmaceutical companies and family associations. The invited speakers, all prestigious Professors from European and non European countries, discussed the following topics: (1) Research achievements in the field of neurodegenerative and neurodegenerative lysosomal storage disorders at clinical and basic science level and in the field of Blood Brain Barrier (BBB); (2) New recent advances on natural history and pathophysiology of LSDs with particular attention to the important role of an early intervention in preventing the morbidity and mortality associated with each of the disorders; (3) Factors which control the entry into the brain of medicines and other therapeutic agents which may be helpful in treating central nervous system disease; (4) How B4B and InNerMeD partners might collaborate with the European Union to stimulate interest on research in iNMDs; (5) The role of the industries in driving innovation for new therapeutic approaches for true unmet needs.
A broad discussion on brain function in normal and pathological conditions was performed with particular attention to the recent advances in diagnostic, treatment options, and technological strategies for a successful management of different neurological affections, in particular LSDs. It was also emphasised the important role of an early intervention in preventing the morbidity and mortality associated with each of the disorders.
In the contest of the InNerMeD Project particular attention was given to the importance of joining the network and participants were invited to fill a questionnaire designed to enlarge the network and collect data around Europe about existing centres of expertise that also are willing to participate to future research including clinical trials. It was explained that all information provided will be pooled together and integrated in the contest of all the information that the InNerMeD platform provides and will be also displayed into the InNerMeD centralised knowledge repository (for more info about the repository please click here). Franco Bartoloni (FGB) explained that the repository will be publically available through the new InNerMeD website that is going to be released in the next few days. Participants had the opportunity to have a preview of the demo version of the new website and of the repository which is publically and easily available from the same new InNerMeD website.
The importance of joining the network and actively contributing to the collection of information was particularly stressed since these actions constitutes crucial tools for facing the great difficulties derived by the ‘rarity’ of the iNMDs, and for favouring the development of biomedical research, straightening research capacities and fostering innovative therapeutic tools to provide the patients community with new advanced therapies. The informal feedback given by the participants was very positive throughout. Many stressed that they had learnt a lot from colleagues working in different fields of science. The meeting was in fact very useful for establishing new interactions between the participants and strengthening existing ones. The Workshop objectives of sharing knowledge and experiences and initiating joint work were achieved. Participants were able to learn more about the pathophysiology of iNMDs and state of the art of development of new therapeutic approaches for crossing the blood brain barrier. It represented a great opportunity for facilitating the sharing of information and experimental unpublished data. It was interesting to note the extent of common concerns among participants across the range of different kinds of projects and organisations.
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