BRAINS FOR BRAIN Onlus Foundation (B4B)

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CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS

logo_brains4brain_02

 

In accordance with the relevant law (124/2017) of the Italian civil code, we hereby publish the information regarding the contributions we received from Italian public institutions during 2019.

 

 

(Only Italian)

COMUNICAZIONE AI SENSI ART. 1 COMMI 125 – 129 LEGGE 04.08.17 N. 124

La legge 124/2017 (pubblicità e trasparenza) ha introdotto, per gli Enti del Terzo Settore, l’obbligo di pubblicare ogni anno sul proprio sito internet (o sulla pagina facebook) le informazioni relative a “sovvenzioni” – “contributi” – “incarichi retribuiti” o comunque “vantaggi economici” di qualunque genere incassati nell’anno precedente e provenienti da pubbliche amministrazioni o da soggetti equiparati.

Il  DL 30.04.19 ha prorogato, a regime, il termine previsto per la iscrizione della suddetta comunicazione al 30 giugno di ogni anno (anziché il 28 Febbraio)

Nel rispetto di tale legge pubblichiamo di seguito il prospetto contabile della Fondazione B4B relativo all’anno 2019


Soggetto erogatore Ammontare Data incasso Causale
Ministero del Lavoro e delle Politiche Sociali 3.754,24  07.08.2019 

Contributo 5×1000

Annualità 2016-2017


 

SAVE THE DATES of the rescheduled B4B workshop: 5th-7th November 2020 in Frankfurt

Dear All,

as you know, due to the evolving public health risk associated with the outbreak of the Coronavirus, the B4B workshop planned for  6-8 March, 2020 was cancelled.  

We are now happy to inform you that  the B4B meeting has now been rescheduled on 5-7 November 2020  in Frankfurt at the  airport Mercure hotel.

Our primary goal is to have a safe meeting that poses no risk to participants and we think that by November the situation will be for sure fine in all the different countries,so please save these dates ( 5-7 November 2020) as the confirmed dates for the rescheduled B4B  meeting.

We thank all of you for your patience and support at this time. Additional information on the scientific programme and meeting logistics will be shared in the next weeks.

You can also see here the last version of the B4B programme, as you can see we were almost ready.

Our heartfelt sympathies go out to everyone impacted by this global health crisis and we wish all of you on the frontline a lot of strength.

PRECEPTORSHIP PROGRAMME ON ON TREATABLE LYSOSOMAL STORAGE DISEASES (LSDs) – MANAGEMENT AND TREATMENT- Salzburg, 29th of June – 1st of July 2020

Immagine

The Brains for Brain Foundation, in collaboration with the Clinical Research Center in Salzburg, and as part of the capacity building and training activities of the European Reference Network for hereditary Metabolic disorders (MetabERN), has organized a PRECEPTORSHIP PROGRAMME ON TREATABLE LYSOSOMAL STORAGE DISEASES (LSDs) – MANAGEMENT AND TREATMENT that will take place at the Salzburg Medical Simulation Center on 29th -30th of June – 1st of July 2020

.

The course will guest about 24 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 complete 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.

Participants: The participants, in a limited number of max 24 physicians (3 physicians each scenario, by bringing in each scenario 1 junior, 1 senior and one specialist), should be fluent in English and experienced in the management of these patients and providing ERT. Participants are required to attend for the entire length of the preceptorship.

Registration: Please contact Ms. Andrea Lughofer (a.lughofer@crcs.at) if you’re interested – you’ll get a link and login data for registration on www.crcs.at

All candidates will be evaluated according to the skills, qualifications, experience and professional interest considered necessary to successfully complete the preceptorship.

IMPORTANT: Please note that participant fee and travel expenses (hotel room, train and flight economy class up to 500 Euro roundtrip) are covered and will be booked by CRCS GmbH. This preceptorship will be made possible by an unrestricted grant by Sanofi Genzyme.

For more details please see the complete programme.

14th B4B Workshoph 2020 CANCELLED

Dear All,

due to the evolving public health risk associated with the outbreak of the Coronavirus, the B4B workshop planned for this month, 6-8 March, 2020 is cancelled.  

Kindly see below or here the official message from Prof Maurizio Scarpa and Prof David Begley (respectively President and Vice-President of the B4B Foundation) 

You can also see here the last version of the B4B programme, as you can see we were almost ready.

We apologise for any inconvenience this necessary change in plans has caused you and your organisation and we hope that you understand and support our decision.

14th Brains for Brain Foundation (B4B) International Workshop, 6th -8th March 2020, Frankfurt – Germany

We are pleased to announce the forthcoming 14th meeting of the Brains for Brain Foundation (B4B).

B4B is an International Task Force (chaired by Prof Maurizio Scarpa) composed of outstanding scientists and ‘clinicians’ who are leaders in the neurological field. Together with Biotech companies they aim to facilitate joint efforts to improve the understanding of rare genetic diseases affecting and seriously damaging the brain, in particular in children. The main mission of the fundation infact consists in the funding of translational research and education in the field of neurodegenerative paediatric disorders  mainly focusing  the attention on a group of about 40 genetically and biochemically very well characterised diseases, called Lysosomal Storage Disorders (LSDs).

According to its traditional programme, the workshop will be held in Frankfurt, Germany, since this venue is really well connected with all the countries and facilitates the participations of people from different parts of the world.

The meeting will therefore take place at the Hotel Mercure Frankfurt Airport.

Please note that this year, to avoid overlapping with other important meetings, this year we will have it in March.

The meeting will  in fact begin on March 6th at 2pm and end on the 8th with lunch. 

As usual, the programme will contain scientific and strategic sessions in which the following issues wlil be discussed:

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, the European Reference Network on Rare heridary diseases (MetabERN) and the European Union might collaborate 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.

A draft of the scientific programme is available here.

 If you wish to attend the workshop, please get in touch with Mrs Paula Caprelli (p.caprelli@jazzitaly.com) as soon as possible in order for us to be able to register your presence and predispose the logistics.

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

 

FEBRUARY 28 2019, IT’S THE RARE DISEASE DAY

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Today is Rare Disease Day: it is time to ‘show your rare’

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS

logo_brains4brain_02

 

In accordance with the relevant law (124/2017) of the Italian civil code, we hereby publish the information regarding the contributions we received from Italian public institutions during 2018.

 

 

(Only Italian)

COMUNICAZIONE AI SENSI ART. 1 COMMI 125 – 129 LEGGE 04.08.17 N. 124

La legge 124/2017 (pubblicità e trasparenza) ha introdotto, per gli Enti del Terzo Settore, l’obbligo di pubblicare entro il 28 febbraio di ogni anno sul proprio sito internet (o sulla pagina facebook) le informazioni relative a “sovvenzioni” – “contributi” – “incarichi retribuiti” o comunque “vantaggi economici” di qualunque genere incassati nell’anno precedente e provenienti da pubbliche amministrazioni o da soggetti equiparati.

Nel rispetto di tale legge pubblichiamo di seguito il prospetto contabile della Fondazione B4B relativo all’anno 2018


Soggetto erogatore Ammontare Data incasso Causale
Ministero del Lavoro e delle Politiche Sociali 4.254,62 16.08.2018 Contributo 5×1000

(annualità 2015-2016)


 

PRECEPTORSHIP PROGRAMME ON RARE DISEASES: MUCOPOLYSACCHARIDOSIS, MANAGEMENT AND TREATMENT – Salzburg, April 10th, 11th and 12th, 2019

Immagine

The Brains for Brain Foundation, in collaboration with the Clinical Research Center in Salzburg and the Medizinisches Simulationszentrum Salzburg, and as part of the capacity building and training activities of the European Reference Network for hereditary Metabolic disorders (MetabERN), has organized a PRECEPTORSHIP PROGRAMME ON RARE DISEASES: MUCOPOLYSACCHARIDOSIS (MPS), MANAGEMENT AND TREATMENT” that will take place at the Salzburg Medical Simulation Center on April 10th, 11th and 12th,   2019.

The course will guest about 15 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 complete 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.

Participants and Requirements – Participants (max 15) are expected to have quite a good experience in the management of MPS patients in particular with the ERT and its possible adverse events. The Preceptorship will be run in English, a good knowledge of the English language is mandatory. Participants are required to attend for the entire length of the preceptorship.

How to apply – If you are interested in the PRECEPTORSHIP PROGRAMME ON RARE DISEASES: MUCOPOLYSACCHARIDOSIS, MANAGEMENT AND TREATMENT,  please send an email  with your CV to Dr. Cinzia Maria Bellettato, the Brains for Brain Scientific Officer,  at c.bellettato@gmail.com

All candidates will be evaluated according to the skills, qualifications, experience and professional interest considered necessary to successfully complete the preceptorship.

 

IMPORTANT: Please note that B4B will cover travel from EU countries only and that non-EU affiliates will have to cover for flights.

For more details please see the complete programme.

13th Brains for Brain Foundation (B4B) International Workshop, 24th -26th January 2019, Frankfurt – Germany

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Prof Maurizio Scarpa (IT) and Dr David Begley (UK)  have officially opened yesterday the 13th meeting of the Brains for Brain Foundation (B4B) that is taking place in Frankfurt in these days (January 24th-26th, 2019)

This  last edition brought together about 100 outstanding scientists and ‘clinicians’  leaders in the neurological field. Such an extended participation is a sign of the increasing awareness of the importance of collaborative research and  interdisciplinary dialogue among experts working on the neurological rare diseases field. In particular 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 Foundation. 

B4B is an International Task Force (chaired by Prof Maurizio Scarpa) aimed at funding  translational research and education in the field of neurodegenerative paediatric disorders,  mainly focusing  the attention on a group of about 40 genetically and biochemically very well characterised diseases, called Lysosomal Storage Disorders (LSDs).

The scientific programme is available HERE.

 

 

13th Brains for Brain Foundation (B4B) International Workshop, 24th -26th January 2019, Frankfurt – Germany

We are pleased to announce the forthcoming 13th meeting of the Brains for Brain Foundation (B4B).

B4B is an International Task Force (chaired by Prof Maurizio Scarpa) composed of outstanding scientists and ‘clinicians’ who are leaders in the neurological field. Together with Biotech companies they aim to facilitate joint efforts to improve the understanding of rare genetic diseases affecting and seriously damaging the brain, in particular in children. The main mission of the fundation infact consists in the funding of translational research and education in the field of neurodegenerative paediatric disorders  mainly focusing  the attention on a group of about 40 genetically and biochemically very well characterised diseases, called Lysosomal Storage Disorders (LSDs).

According to its traditional programme, the workshop will be held in Frankfurt, Germany, since this venue is really well connected with all the countries and facilitates the participations of people from different parts of the world.

The meeting will therefore take place at the Hotel Mercure Frankfurt Airport.

Please note that this year, to avoid overlapping with other important meetings (e.g the Gordon Lysosomal Disease Conference in Galveston, Texas, March 3rd -8th 2019), we will have it in January.

The meeting will  in fact begin on January 24th at 2pm and end on the 26th with lunch. 

As usual, the programme will contain scientific and strategic sessions in which the following issues wlil be discussed:

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, the European Reference Network on Rare heridary diseases (MetabERN) and the European Union might collaborate 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.

A draft of the scientific programme will be made available HERE.

 If you wish to attend the workshop, please get in touch with Mrs Paula Caprelli (p.caprelli@jazzitaly.com) as soon as possible in order for us to be able to register your presence and predispose the logistics.

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