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07/06/2023

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS DURING 2021

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS DURING 2021
  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…
14/03/2022

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS DURING 2020

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS DURING 2020
  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…
23/02/2021

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS
  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…
07/10/2020

B4B Workshoph 5-7 November 2020 CANCELLED

Dear All, due to the evolving public health risk associated with the outbreak of the Coronavirus, the B4B workshop planned for next month, 5-7 November, 2020 is cancelled.  …
28/05/2020

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS
  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…
08/04/2020

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…
27/02/2020

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

PRECEPTORSHIP PROGRAMME ON ON TREATABLE LYSOSOMAL STORAGE DISEASES (LSDs) - MANAGEMENT AND TREATMENT- Salzburg, 29th of June – 1st of July 2020
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…
25/02/2020

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.  …
27/11/2019

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…
28/02/2019

FEBRUARY 28 2019, IT’S THE RARE DISEASE DAY

FEBRUARY 28 2019, IT'S THE RARE DISEASE DAY
Today is Rare Disease Day: it is time to ‘show your rare’ Wednesday 28 February marks the twelth edition of the international Rare Disease Day…
28/02/2019

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS

CONTRIBUTIONS FROM ITALIAN PUBLIC INSTITUTIONS
  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…
12/02/2019

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

PRECEPTORSHIP PROGRAMME ON RARE DISEASES: MUCOPOLYSACCHARIDOSIS, MANAGEMENT AND TREATMENT - Salzburg, April 10th, 11th and 12th, 2019
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…
25/01/2019

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

13th Brains for Brain Foundation (B4B) International Workshop, 24th -26th January 2019, Frankfurt – Germany
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…
20/08/2018

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…
10/03/2018

Launch of a new public-private partnership to improve clinical trial infrastructure to facilitate the development of new drugs for children in Europe

The members of the “conect4children” (c4c) initiative today announced the start of a large collaborative paediatric network that will facilitate the development of new drugs…
28/02/2018

FEBRUARY 28 2018, IT’S THE RARE DISEASE DAY

FEBRUARY 28 2018, IT'S THE RARE DISEASE DAY
Today is Rare Disease Day: it is time to ‘show your rare’ Wednesday 28 February marks the eleventh edition of the international Rare Disease Day…
13/02/2018

SSIEM Annual Symposium

SSIEM Annual Symposium
  Brains for Brain is pleased to inform you that the Annual Symposium of the Society for the Study of Inborn Errors of Metabolism (SSIEM) will be…
02/02/2018

12th Brains for Brain Foundation (B4B) International Workshop, 8-10 March 2018, Frankfurt –Germany

12th Brains for Brain Foundation (B4B) International Workshop, 8-10 March 2018, Frankfurt –Germany
We are pleased to announce the forthcoming 12th meeting of the Brains for Brain Foundation (B4B) . B4B is an International Task Force (chaired by Prof Maurizio…
02/02/2018

New light shines on our understanding of rare diseases

New light shines on our understanding of rare diseases
French and Canadian scientists make discovery that could affect diagnosis, genetic counselling and therapeutic approaches in patients with a rare conditionMontreal – Rare hereditary recessive…
09/01/2018

THE SAD NEWS OF THE PASSING OF CHRISTINE LAVERY

THE SAD NEWS OF THE PASSING OF CHRISTINE LAVERY
We were deeply saddened to hear that the brave and inspiring Christine Lavery passed away on Tuesday 19th December 2017 in hospital surrounded by her…
23/10/2017

MetabERN at the European Health Forum Gastein (EHFG) 2017: Health in All Politics – a better future for Europe

MetabERN at the European Health Forum Gastein (EHFG) 2017: Health in All Politics – a better future for Europe
The 20th anniversary edition of the EHFG took place 4-6 October 2017 in Bad Hofgastein, Austria, gathering over 500 participants. The EHFG is the most…
18/10/2017

European Reference Networks Info Day: Italy ‘key player’ in Europe in fighting rare diseases

European Reference Networks Info Day: Italy 'key player' in Europe in fighting rare diseases
Organized by the Italian Ministry of Health, the ERN Info Day’ was held in Rome (Italy) on October 16th, 2017.This meeting was aimed to create…
18/10/2017

A Unified Registry for Inherited Metabolic Disorders (U-IMD)

A Unified Registry for Inherited Metabolic Disorders (U-IMD)
  Following the call for applications for Rare diseases (3rd Public Health Programme) in support of the setup of new registries, the Brains for Brain Foundation…
03/10/2017

PRECEPTORSHIP PROGRAMME ON RARE DISEASES: MUCOPOLYSACCHARIDOSIS, MANAGEMENT AND TREATMENT – Salzburg, November 20th, 21st and 22nd, 2017

PRECEPTORSHIP PROGRAMME ON RARE DISEASES: MUCOPOLYSACCHARIDOSIS, MANAGEMENT AND TREATMENT - Salzburg, November 20th, 21st and 22nd, 2017
The Brains for Brain Foundation, in collaboration with the Centre for Rare Diseases at the Helios Horst Schmidt Kliniken in Wiesbaden & the Clinical Research…
09/08/2017

Maurizio Scarpa has been appointed as a member of the IRDiRC Therapies Scientific Committee

Maurizio Scarpa has been appointed as a member of the IRDiRC Therapies Scientific Committee
 Brains for Brain Foundation is proud to announce that  the Consortium Assembly of the International Rare Diseases Research Consortium (IRDiRC) has voted to appoint Maurizio…
09/08/2017

IRDiRC has a new vision: Enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention

IRDiRC has a new vision: Enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention
Brains for Brain is glad to share the new vision and goals of the International Rare Diseases Research Consortium (IRDiRC). IRDiRC teams up researchers and organisations…
27/06/2017

BRUSSELS, 21 JUNE 2017_ Maurizio Scarpa is the newly appointed Chairman of the BOARD OF ERNs COORDINATORS

BRUSSELS, 21 JUNE 2017_ Maurizio Scarpa is the newly appointed Chairman of the BOARD OF ERNs COORDINATORS
Brussels June 21st  2017_ MetaBERN is delighted to announce the appointment of its Coordinator, Prof Maurizio Scarpa, as the first Chairman of the European Reference…
05/06/2017

Cross-linking European Reference Network

Cross-linking European Reference Network
 24 European Reference Networks (ERNs) were formally launched on 9 March 2017. Representatives from the networks and Member States, along with patients and policymakers, gathered…
14/03/2017

IT’S BRAIN AWARENESS WEEK!!!

IT'S BRAIN AWARENESS WEEK!!!
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…
13/03/2017

Vilnius, 9 March 2017_ European Commission award ceremony to congratulate and officially launch the newly established 24 European Reference Networks (ERNs).

Vilnius, 9 March 2017_ European Commission award ceremony to congratulate and officially launch the newly established 24 European Reference Networks (ERNs).
              The Third Conference on European Reference Networks took place in Vilnius at the Lithuanian Exhibition and Congress Centre LITEXPO…
10/03/2017

The European Reference Network for Hereditary Metabolic Diseases (MetabERN) has been launched

The European Reference Network for Hereditary Metabolic Diseases (MetabERN) has been launched
          5 pm. 10 March 2017_Helios Dr. Horst Schmidt Kliniken (HSK)-Center for Rare Diseases, Department of Pediatric and Adolescent Medicine in…
28/02/2017

11th Brains for Brain Foundation (B4B) International Workshop, 29th March-1st April 2017, Frankfurt –Germany

11th Brains for Brain Foundation (B4B) International Workshop, 29th March-1st April 2017, Frankfurt –Germany
We are pleased to announce the forthcoming 11th meeting of the Brains for Brain Foundation (B4B) . B4B is an International Task Force(chaired by Prof Maurizio Scarpa)…
28/02/2017

On 1 March the newly established European Reference Networks (ERNs) will start their work FOR THE PATIENTS WITH RARE DISEASES

On 1 March the newly established European Reference Networks (ERNs) will start their work FOR THE PATIENTS WITH RARE DISEASES
ERNs are unique and innovative cross-border cooperation platforms between specialists for the diagnosis and treatment of rare or low prevalence complex diseases. Speaking to doctors,…
28/02/2017

FEBRUARY 28 2017, IT’S THE RARE DISEASE DAY

FEBRUARY 28 2017, IT'S THE RARE DISEASE DAY
Today is Rare Disease Day 2017! Today, with events taking place in over 90 countries all around the world, we hope to raise more awareness than…
23/01/2017

MetabERN informative material

MetabERN informative material
The informative synopsis about the European Reference Network for Hereditary Metabolic Diseases (MetabERN) has been developed with the aim to make different stakeholders aware about the project…
09/01/2017

MetabERN is one of the 23 approved European Reference Networks For Rare Diseases

MetabERN is one of the 23 approved European Reference Networks For Rare Diseases
On 15th December the Board of Member States of European Reference Networks (ERNs) voted to approve all 23 ERN proposals submitted under the first wave…
26/08/2016

Call for proposals: 7th NCL Research Award (NCL Foundation)

The NCL Foundation aims to help find a cure for the most prevalent form of childhood dementia caused by mutations in the CLN3 gene. Together with the existing…
04/07/2016

The European Reference Network for Hereditary Metabolic Diseases (MetabERN) is underway

The European Reference Network for Hereditary Metabolic Diseases (MetabERN) is underway
On June 21st 2016, the Helios Dr. Horst  Schmidt Kliniken has submitted a proposal to the European Commission aimed at establishing the European Reference Network…
12/03/2016

10th B4B Workshop and InNerMeD 3rd Open Conference

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…
12/03/2016

BRAIN AWARENESS WEEK

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…
25/02/2016

B4B IS A FRIEND OF RARE DISEASE DAY!

B4B IS A FRIEND OF RARE DISEASE DAY!
  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…
29/01/2016

10th B4B Workshop- Attendance and Contacts

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…
08/01/2016

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

 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…
05/01/2016

A Plan to facilitate and encourage research in iNMDs

A Plan to facilitate and encourage research in iNMDs
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…
26/11/2015

10th B4B Workshop-New meeting location

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…
31/10/2015

PRECEPTORSHIP PROGRAMME ON MUCOPOLYSACCHARIDOSES

PRECEPTORSHIP PROGRAMME ON MUCOPOLYSACCHARIDOSES
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…
14/10/2015

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

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…
14/10/2015

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

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…
30/07/2015

EUROPEAN REFERENCE NETWORKS: 2ND CONFERENCE ON ERN – Lisbon, 8-9 October 2015

EUROPEAN REFERENCE NETWORKS: 2ND CONFERENCE ON ERN - Lisbon, 8-9 October 2015
  The European Commission is organising a 2nd conference on European Reference Networks on 8-9 October 2015, which will be hosted by the Ministry of Health in…
30/07/2015

“Realising European Reference Networks for Rare Diseases: a preparatory workshop for the rare disease field” – Bruxell, 1-2 July 2015

“Realising European Reference Networks for Rare Diseases: a preparatory workshop for the rare disease field” - Bruxell, 1-2 July 2015
The Brains for Brain Foundation (B4B), the organisation leading the Inherited NeuroMetabolic Diseases Information Network (InNerMeD-I-Network) project, has recently participated at the workshop “Realising European Reference…