brains4brain | Brains for Brain

12/03/2016

10th B4B Workshop and InNerMeD 3rd Open Conference

Brains for Brain Foundation (B4B), the organisation leading the “Inherited NeuroMetabolic Disease Information Network” (InNerMeD-I-Network) project, is pleased to announce that “The 10th B4B Plenary Workshop and InNerMeD Information Network 3rd Open Conference” will be jointly held in Madrid on March 16th – 19th 2016 at the Hotel Rafael Atocha.

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

As usual, the programme will contain scientific and a strategic sessions on the following main topics:

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 InNerMeD partners might collaborate with the European Union to stimulate interest on research in rare diseases;
The role of the industries in driving innovation for new therapeutic approaches for true unmet needs.

Moreover, this year the programme includes a Plenary Session to mark the retirement of Prof. David Begley. This special session will reflect David’s major scientific contributions, and will consist of a mix of review lectures and contributions on new developments on Blood Brain Barrier and the delivery of therapeutics to the brain.

The session dedicated to InNerMeD project will see the participation of representatives of the European Commission and European Organizations to discuss the important issue of the dissemination of scientific information in the field of rare disease.

The detailed programme of the event is available here: Brains For Brain 2016

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12/03/2016

BRAIN AWARENESS WEEK

by brains4brain

THE BRAINS FOR BRAIN ONLUS FOUNDATION PROMOTES THE BRAIN AWARENESS WEEK
March 14-20, 2016

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, which is also the organisation leading the Inherited NeuroMetabolic Diseases Information Network (InNerMeD-I-Network) project (www.innermed.eu), has organized the B4B & INNERMED meeting that will take place at the Hotel Rafael Atocha in Madrid, Spain, on March 16-19, 2016.

The programme will contain scientific and strategic sessions in which we will discuss:

1. Research achievements in the field of neurodegenerative diseases;

2. New recent advances on diseases natural history and pathophysiology ;

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 rare neurological diseases;

5. The role of the industries in driving innovation for new therapeutic approaches for true unmet needs.

Moreover, the programme includes a Plenary Session to mark the retirement of David Begley. This special session will reflect David’s major scientific contributions, and will consist of a mix of review lectures and contributions on new developments on Blood Brain Barrier and the delivery of therapeutics to the brain.

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 InNerMed 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.

Stay tuned for more updates

T download the scientific programme of the event click here :Brains For Brain 2016

Events

25/02/2016

B4B IS A FRIEND OF RARE DISEASE DAY!

by brains4brain

B4B IS A FRIEND OF RARE DISEASE DAY!

Celebrated on the last day of February–the rarest day on the calendar–this is the one day every year when the world comes together to improve the lives of people living with rare diseases.

On 29th February 2016 the international rare disease community celebrates the ninth Rare Disease Day, coordinated by EURORDIS.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries. Even though the campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in over 80 countries around the world in 2015. This number will hopefully increase with many new partners in 2016. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

The Rare Disease Day 2016 theme “Patient Voice” recognises the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers. The Rare Disease Day 2016 slogan “Join us in making the voice of rare diseases heard” appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.

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

29/01/2016

10th B4B Workshop- Attendance and Contacts

by brains4brain

10th anniversary of the Brains for Brain Foundation.

We are pleased to announce that in these days, we are drafting the scientific program of the next B4B meeting that will take place at the Hotel Rafael Atocha in Madrid, Spain, on March 16-19, 2016.
As usual, the programme will contain scientific and a strategic sessions in which we will discuss:
1. 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;
2. New recent advances on natural history and pathophysiology of LSDs;
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 rare diseases;
5. The role of the industries in driving innovation for new therapeutic approaches for true unmet needs.

Moreover, this year the programme includes a Plenary Session to mark the retirement of David Begley. This special session will reflect David’s major scientific contributions, and will consist of a mix of review lectures and contributions on new developments on Blood Brain Barrier and the delivery of therapeutics to the brain.

To download the Scientific Programme click here: Brains For Brain 2016

If you wish to attend the workshop, please get in touch with Mrs Paula Caprelli (p.caprelli@jazzitaly.com) asap for your hotel arrangements.

Contrary to the last few editions of the Meeting, we are working with a new hotel (in a different city) so we need to know the number of participants as soon as possible since we must confirm with the hotel management.
Please get back to her shortly with the dates of your attendance, as well as your travel info (if you already have it), so we can book the rooms, meals and meeting services.

For general enquiries or any additional required information, please get in touch with Dr. Cinzia Maria Bellettato (c.bellettato@gmail.com)

Thank you for your collaboration

To download the Scientific Programme click here: Brains For Brain 2016

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08/01/2016

The Pathobiology of the Lysosome and Lysosomal Diseases Conference, 7th – 10th July 2016

by brains4brain

The Pathobiology of the Lysosome and Lysosomal Diseases Conference 2016 shall take place at Clare College, Cambridge, UK in July 2016

This conference will present an overview of recent progress in the understanding and management of lysosomal storage disorders. Internationally renowned scientists will cover subjects ranging from the basic biology and pathophysiology of this group of disorders to discussions of animal models, genetics, advancements in treatment, and pharmacoeconomic challenges posed by rare diseases in general and lysosomal disorders in particular.

Dont miss out on this fantastic speaker line-up, click here to view the speakers. You can also submit an abstract, oral or poster, before 7th May 2016.

For more info visit http://www.zingconferences.com/conferences/the-metabolic-role-of-the-lysosome-and-nutrient-sensing/

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05/01/2016

A Plan to facilitate and encourage research in iNMDs

by brains4brain

InNerMeD-participated-in-the-public-Consultation-on-Gaucher-Disease

Since inherited neurometabolic diseases (iNMDs) are rare diseases affecting a small population of patients, their recruitment in biomedical research, including clinical trials, is getting more and more difficult, due to geographical dispersion and economic, methodological and ethical barriers. To provide a plan to facilitate and encourage research in the field of iNMDs, facilitating the identification of group of patients (target populations) to be involved in future clinical studies and other researches, an inventory of target populations and methodological recommendations on how to conduct clinical research on iNMDs has been developed and finalised by Prof. Adriana Ceci and Dr. Viviana Giannuzzi (Fondazione per la Ricerca Farmacologica Gianni Benzi onlus) in the context of the InNerMeD WP7 (Activities favouring biomedical research). The document also includes ethical recommendations to conduct studies involving iNMD patients with the highest ethical standards. The document addresses researchers (both from companies and research centres), Ethics Committees, patients and families. Importantly these ethical recommendations have been extended to patients affected by other rare diseases as well as non-EU patients.

To download the document click here.

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26/11/2015

10th B4B Workshop-New meeting location

by brains4brain

10th anniversary of the Brains for Brain Foundation.

We are pleased to announce that in these days, we are drafting the scientific program of the next meeting and we wish to have a special one not only at scientific level but also at personal one.

This year, we wanted to organize it in Sardinia, Italy, the region from which the initial grants came from. Indeed, it was due to a major grant from a Sardinia family whose child was affected by Metachromatic Leukodystrophy that the B4B adventures could take off and the Foundation could then enforce its research activity. Everything seemed fine, but unfortunately, due to some unforeseen bureaucratic problems it is now no more possible to held the meeting in Italy, so we have just recently chose to move to Madrid, where the first official B4B meeting was held about 10 years ago. The 10th B4B meeting will therefore take place at the Hotel Rafael Atocha in Madrid, Spain, on March 16-19, 2016.

We are terrible sorry for the inconvenience this will produce and for causing you so much trouble, but we want to make sure we provide the best solution for such an important occasion.

As usual, the programme will contain scientific and a strategic sessions in which we will discuss:

1. 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;

2. New recent advances on natural history and pathophysiology of LSDs;

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 rare diseases;

5. The role of the industries in driving innovation for new therapeutic approaches for true unmet needs.

More details will follow soon, stay tuned for more updated info!!!

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31/10/2015

PRECEPTORSHIP PROGRAMME ON MUCOPOLYSACCHARIDOSES

by brains4brain

The Brains for Brain Foundation, in collaboration with the Centre for Rare Diseases at the Helios Horst Schmidt Kliniken in Wiesbaden and as part of the EU funded project, INNERMED, is greatly committed not only to the management of patients but also to increase as much as possible the awareness and the training of medical professionals on neurometabolic diseases, with a particular effort on Lysosomal Diseases.

To this aim we have organized 2 Courses taking place at the Center for Rare Diseases at the Children’s Hospital of the HSK in Wiesbaden from November 2^nd to 4^th and from November 30^thtoDecember 2^nd, 2015, respectively.

Each course will guest 10 physicians from different countries who will visit to share experiences and being updated on the recent development on MPS. The meeting will also provide a comprehensive global forum for experts and participants to exchange ideas and present results on all aspects of MPSs. For more details please see the scientific programme.

Objective – The overall objective of the course is to train professionals with a scientific background and an interest on Lysosomal Storage Diseases, in particular Mucopolysaccharidoses (MPSs) and to provide them with theoretical expert knowledge and practical experience in both the recognition of these diseases and related management. The practical experience in management and treatment of MPSs will be gained through the use of patient case studies that the participants will work on throughout the course and in parallel with new topics being added to their theoretical knowledge base.

Expected results – The main expected results of this program consist in ensuring safe and effective initiation of therapies in patients from countries where there is not experience of administration; decreasing the possibility of severe adverse events during treatment and helping patients to receive a state of the art follow up.

Learning outcomes – At the end of the course participants will be able to discuss a multidisciplinary approach for the management and treatment of these complex disorders assuring an adequate follow up of patients by evaluating the status of the disease.

Stay tuned for more info!

Scientific Programme 2-4 Nov 2015	Scientific Programme 30 Nov-2 Dec 2015

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14/10/2015

B4B and BtRAIN – The European Training Network (Brain Barriers Training)

by brains4brain

Brains for Brain is proud to be one of the BtRAIN Associated training partners.

Such cooperation strengthens our long-standing commitment to bring forward new and innovative therapeutic strategies to cross the Blood-Brain Barrier.

Logo_mittel

What is BtRAIN research about?

In their function to protect the central nervous system (CNS) from neurotoxic compounds the brain barriers block delivery of drugs to the CNS thus hindering proper diagnosis and effective treatment of neurological disorders. The high complexity of the brain barriers has severely hampered progress in the CNS therapeutic market.un

BtRAIN will create a truly novel next generation of brain barriers researchers, who have integrated the trans-disciplinary expertise including experimental methodology, thinking and language provided within BtRAIN.

Their unique abilities to design out of the box research approaches will make them highly desired researchers in the academic and non-academic sector devoted to brain barriers research.

BtRAIN bridges this gap by creating unique knowledge on the vertebrate brain barrier signature genes and their specific role in regulating brain barriers function in development, health, ageing and disease. This is prerequisite to overcome the unmet need for the development of diagnostic or therapeutic tools at the level of the brain barriers.

Early stage researcher/PhD student positions available in the European Training Network Brain

by brains4brain

The European Training Network Brain Barriers Training – BtRAIN invites applications for 12 positions for Early Stage Researchers (ESR)/PhD students.

Research in BtRAIN (www.btrain-2020.eu) is dedicated to create and disseminate unique knowledge on the vertebrate brain barrier signature genes and their specific role in regulating brain barrier function in development, health, ageing and disease. BtRAIN will train a new generation of young researchers to think out of the box and to bridge disciplinary interfaces by providing trans-disciplinary training in research and technological development in the field of brain barriers research.

To achieve such a holistic overview on the biology of the vertebrate brain barriers, BtRAIN provides a unique trans-disciplinary and trans-sectorial environment, combining the expertise of clinical and non-clinical researchers in biomedical disciplines (developmental biology, vascular and cell biology, physiology, pharmacology, neuroimmunology) and technologies (chemistry, bioenigneering and imaging of the brain barriers) with that of bioinformatics from the academic and non-academic sector. BtRAIN fosters intense contacts of 12 academic and 6 non-academic partners from 7 EU countries, CH, USA and the European Network Brains4Brain.

The following BtRAIN projects are available:

The following BtRAIN projects are available

Project 1: In vitro models of the blood brain-barrier (BBB) and applications in pharmacological and toxicological screenings

Project 2: In vitro models of the blood-brain and blood- ce rebrospinal fluid (CSF) barriers using an integrated microfluidic device

Project 3: Comparison of mouse and zebrafish cerebral endothelial cell transcriptomes and functional investigation of conserved pathways governing brain angiogenesis and BBB formation

Project 4: Integrative meta-analysis of public and novel vertebrate BBB omics data and establishment of the BBBhub platform

Project 5: Role of the orphan G-protein-coupled receptor Gpr126 signalling in the development of the blood-brain barrier

Project 6: Age-induced changes in gene and microRNA expression at the mouse blood-brain barrier

Project 7: Blood-brain barrier derived non-conding RNAs as functional biomarkers for the aging BBB versus the BBB in Alzheimer’s Disease

Project 8: Brain endothelial mechanisms directing the cellular pathway of T cell migration across the BBB

Project 9: Contribution of the BBB in amyloid-b biology in Alzheimer’s disease

Project 10: Exploring CD4+ T cells as carriers to mediate transport of drugs across the blood-brain barrier

Project 11: Role of different receptors in promoting pathogen and leukocyte migration across the brain cerebrospinal fluid barrier (BCSFB) in meningitis

Project 12: Molecular control of the human brain barriers in health and neuroinflammation

Eligibility Criteria

BtRAIN is a research fellowship programme for ‚Early Stage Researchers (ESR)’. If you intend to do your PhD and you have less than 4 years research experience, you might apply for a fellowship. Applicants will have to meet the Marie Sklodowska-Curie eligibility criteria (http://ec.europa.eu/research/participants/data/ref/h2020/wp/2014_2015/main/h2020-wp1415-msca_en.pdf p40-41).

Pre-requisites for the candidates

University Master Degree in any discipline in the Life Sciences, Medical Sciences, or in Biomedical Engineering, Chemistry or Bioinformatics, depending on the project applied for
Mobility during the program to fullfill the requirements for secondments
Ability to work in an international team and to meet deadlines
Ability to analyze, integrate and communicate large amounts of data
Ability to multi-task

Submit your application now: http://www.btrain-2020.eu/application

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