The Annual Scientific Conference on Sickle Cell and Thalassaemia (ASCAT) brought together consultants, specialist psychologists, nurses, scientists, and other experts in haemoglobinopathies in London from 21–23 October 2019. This must-attend event offered a chance to explore the latest advances in diagnosis, treatment, and emerging fields in haemoglobinopathies. Participants engaged with updates on clinical care, transition […]

Registries were key resources for increasing timely and accurate diagnoses, improving patient management, tailoring treatments, facilitating clinical trials, supporting healthcare planning, and accelerating research. The International Summer School on Rare Disease Registries and FAIRification of Data was part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD). […]

Fondazione Gianni Benzi is partner of the 7th European Association of Health Law (EAHL) Conference“Innovation & Healthcare – New challenges for Europe”, under the patronage of the Council of Europe. In this context, the Foundation organises the workshop “Innovative medicine and research: ethical, legal and regulatory issues”. The EAHL Conference, which took place in Toulouse from 25 […]

The Department of Biosciences, Biotechnologies and Biopharmaceutics of the University of Bari hosted the kick-off meeting of the Biomis project, which aimed at creating a biobank of intestinal microbiota and human saliva. After the welcome speech by Felice Ungaro (Head of the Puglia Region Health Marketplace), Prof. Maria Svelto introduced the project, its objectives, and […]

Last March 4 the Gianni Benzi Foundation organized in Bari the conference Congenital Haemoglobinopathies: scientific updates and services organization for sickle cell disease.

Sickle Cell Disease (SCD) is a disease until a few decades ago almost unknown in our countries and today, as a result of migratory flows to Europe, is considered one of the most relevant hematological emergencies in the world. SCD is a serious disease having specific clinical and therapeutic needs and  different outcomes depending on the […]

The Crowne Plaza Hotel in Brussels hosted the kick-off meeting of the ARISE project. The meeting, held on 15–16 January 2019, officially launched the activities of this project, coordinated by the Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus (Italy) and the Guys and St Thomas’ NHS Foundation Trust (UK). The project aimed to create a […]

On 30-31 January 2019, the European Joint Programme on Rare Diseases officially kicked off in Paris, at the Institut IMAGINE. This important initiative brought together over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem that enabled a virtuous circle between research, care, and medical innovation. The EJP RD had two main objectives: […]

On 29-30 November in Warsaw Fondazione Gianni Benzi and the Children’s Memorial Health Institute (IPCZD) are organizing the SMART Final Open workshop “Paediatric Foresight Training Course: Current status and future changes in the European paediatric biomedical research”. The workshop is aimed at evaluating the competences gained by the Children’s Memorial Health Institute staff and the […]

The CloSed consortium met in Amsterdam for the final project meeting on 6 to 7 November 2018. The Dutch patient association involved in the project, VSOP (Vereniging Samenwerkende Ouder – en Patiëntenorganisaties), hosted this meeting at the Crowne Plaza Amsterdam – South.