All posts by B_467ibrain

03/03/2014

Frankfurt 2014 – March, 7th-9th 2014

by B_467ibrain

8th BRAINS FOR BRAIN PLENARY WORKSHOP
and
INNERMED INFORMATION NETWORK 1st OPEN CONFERENCE
Frankfurt, Germany,
Mercure Hotel Frankfurt Airport
March 7th – 9th, 2014

Brains for Brain Foundation (B4B), the organization leading the “Inherited NeuroMetabolic Disease Information Network” (InNerMeD-I Network) project, is pleased to announce that “THE EIGHTH B4B WORKSHOP AND INNERMED INFORMATION NETWORK 1ST OPEN CONFERENCE” will be jointly held in Frankfurt on March 7th – 9th, 2014.

The meeting aims to enable information exchange among clinicians, basic scientists and experts specialised in inherited neurometabolic diseases (iNMDs), pharmaceutical companies and family associations.

Workshop

Invited speakers, all prestigious Professors from European and non European countries will discuss the following topics:
Basic aspect of iNMDs and in particular Lysosomal Storage Diseases (LSDs)
Pathophysiology of these diseases
Strategy to overcome the Blood Brain Barrier and therapeutic options
B4B and InNerMeD-I Network European actions
Biotech collaborations

A broad discussion on brain function in normal and pathological conditions will be 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 will also be emphasised the important role of an early intervention in preventing the morbidity and mortality associated with each of the disorders. The programme will culminate with the public presentation of the InNerMeD project, its objectives and development process, its strategic relevance, its methods and means with particular attention to the dedicated website platform.
The meeting represents an excellent occasion to foster fruitful scientific interactions and discussions. Infact it provides a great opportunity for exchanging information and for discussing the last most relevant research findings on iNMDs.
The increasing number of participants that every year attend the annual B4B Symposium are 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 prove of evidence of the successful networking activity performed by the Brains for Brain International Foundation on behalf of all InNerMeD-I Project Partners.

Meeting

20/02/2014

RARE DISEASE DAY

by B_467ibrain

B4B is a friend of RARE DISEASE DAY
28 February 2014

28 February 2014 marks the seventh international Rare Disease Day coordinated by EURORDIS.
On and around this day hundreds of patient organisations from more than 70 countries and regions worldwide are planning awareness-raising activities around the slogan “Join Together for Better Care”.
B4B welcomes this initiative and is pleased to contribute to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Due to the fragmentation of knowledge, it can take years before a patient affected by rare diseases get diagnosed. B4B considers the promotion and the coordination of Research extremely important for health care system, and particularly for Rare Diseases, since they represent the tools by which speed up the achievements of results in research and benefits for patients. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need.
B4B has done and will continue to do big efforts in order to encourage clinicians to work together in the most effective and efficient way in order to produce the best health outcomes for the patients.

For more info about the rare disease day please visit http://www.rarediseaseday.org/

Events

18/02/2014

BRAIN AWARENESS WEEK

by B_467ibrain

THE BRAINS FOR BRAIN ONLUS FOUNDATION PROMOTES THE BRAIN AWARENESS WEEK
March 10-18, 2014

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 educating the public about the wonders of the brain and the nervous system and organizing a series of conferences, focused on the understanding of pathophysiology and therapy for neurodegenerative disorders, throughout which participants can learn from top neuroscientists news on latest scientific findings on Brain and Brain related diseases.

Events

17/02/2014

SCIENCE AND INNOVATION: CLOSER THAN RARE!

by B_467ibrain

Brussels – 17th February 2014
B4B ATTENDED THE WORKSHOP
“SCIENCE AND INNOVATION: CLOSER THAN RARE!”

With the purpose of impacting the Institutional Leaders and the Society to the problem of rare diseases and encouraging constructive action on the part of policy makers, B4B actively participated to the Workshop “SCIENCE AND INNOVATION: CLOSER THAN RARE!” held at the European Parliament in Brussels on 17th February 2014.
The workshop, hosted by MEPs Maria da Graça CARVALHO, and Mario DAVID under the patronage of the Presidency of the Portuguese Republic, First Lady of Portugal Maria Cavaco Silva, was also attended by Tonio BORG, Commissioner for Health and Consumer Policy, European Commission.
During the meeting it was generally agreed that much of European research lacks overall coordination and remains a little fragmentary.
One of the big challenges with rare disease is diagnosis.
Diagnosing a rare diseases is in fact often a long and complex process. This is mainly due to the fact that scientific knowledge is generally insufficient and scattered. The development of joint actions and collaborative efforts were encouraged since cooperation is the crucial key necessary to overcome the gaps in research in the area of rare diseases in EU.
It was highlighted the importance of pooling knowledge, resources and expertise on rare diseases, funding related research and authorising the best possible medicines for these diseases.
Participants agreed to continue their hard work so that in the near future, each and every patient affected by a rare disease can access the best possible diagnosis and care.

Download Agenda

Click on the files below for suggested reading
Graca Carvalho – speech and Tonio Borg – speech

Events

14/02/2014

B4B EP ROUNDTABLE

by B_467ibrain

“Paving the Way for a Competitive and Dynamic EU Knowledge Economy: the Way Forward in Rare Diseases”. Rare Neurometabolic Pediatric Diseases: a joint effort is needed for a competitive and dynamic EU knowledge economy.

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Brussels, 26 November 2013 – The Roundtable, spearheaded by the Brains for Brain international research foundation and hosted by MEP Amalia Sartori, Chairwoman of the Parliament’s Industry, Research and Energy (ITRE) Committee and MEP Maria Graça da Carvalho (ITRE Committee), was held in the European Parliament in Brussels (Belgium). The meeting rallied numerous relevant stakeholders to discuss initiatives aiming to create a model of intersectoral cooperation that could facilitate the set-up of a European PhD Programme in the area of rare neurometabolic paediatric diseases (RPNMDs). In line with the core principles established by “Towards a Maastricht for Research” (The Maastricht for Research Manifesto, published by MEP Amalia Sartori and MEP Luigi Berlinguer in June 2013), the Brains for Brain Foundation has in fact created a network of Universities and Scientific Societies to start a doctorate programme aimed at furthering the knowledge on neurometabolic diseases amongst young physicians and scientists in order to establish an European Network of specialized experts and maintain excellence in Europe. Such initiative intends to enhance an advance awareness and knowledge about RPNMDs via cross-border collaboration and to enable better diagnosis and management of patients affected by these diseases.
All participants were highly motivated and overall there was a strong sense of collaboration and of excitement. The outcome of the workshop was very encouraging and positive. It was generally agreed that overcoming barriers in health research and reversing the brain drain should be made political priorities at European level. This will require action from policy makers, hospital administrators, healthcare providers, patient groups and citizens across Europe. During the meeting researchers, clinicians, patient advocacy groups, and many other interested stakeholders from 20 European organisations active in the field of health have signed the B4B Manifesto to maximise investments in health research and advance care for children with rare neurometabolic diseases. B4B Roundtable represents a major step toward the establishment of a successful EU cross border collaboration and cooperation to raise awareness about RPNMDs and keep them on the health-care agenda. Although individually rare by definition, RPNMDs collectively affect millions of people worldwide. Joint forces to tackling rare diseases are essential to ensure that children affected by RPNMDs are given the priority they deserve and that they needs are met.