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Newsletter no. 7 - June 2020

News from the current emergencies COVID-19

In the latest months, we have been facing a health emergency due to the spreading of a novel Coronavirus that led the World Health Organisation to declare the pandemic status. The spreading of the virus is accompanied by the spreading of fake news, therefore we started an awareness initiative by sharing some useful tips to recognise and avoid them. Moreover, useful and reliable information, focusing on topics of interest in this crucial situation, has been provided. To this end, Fondazione Gianni Benzi regularly collects data related to the COVID-19 clinical trials in a dedicate webpage.
We take the occasion to inform you that we are well and safely working from our homes! All our activities have not been suspended.
Everything will be all right!


It is now online the COVID-19 page on our website! This page intends to provide with an overview of the clinical trials and studies currently conducted worldwide for COVID-19. Fondazione Gianni Benzi will provide detailed information on the studies including phase, study design and results when available. In response to the global COVID-19 emergency, several clinical trials assessing candidate interventions, including experimental treatments or vaccines as well as repurposed medicines, are emerging at an unprecedented rate. It is crucial to generate robust and interpretable evidence that would allow prompt definition of effective and safe investigational or repurposed medicinal products for the treatment or the prevention of COVID-19. The page is regularly updated. Consult and share it! 

Read more - Visit the COVID-19 page


Fondazione Gianni Benzi, within the ARISE project, presented the webinar “COVID-19 and Sickle Cell Disease: the current scenario” that was held on the 19th May (Session 1) and the 28th May (Session 2). The webinar was the occasion to better understand the impact of the COVID-19 on the Sickle Cell Disease population. Prof. Baba Inusa along with relevant experts in the field of haemoglobinopathies from different countries, gave their contributions to the webinar by sharing their knowledge and experiences about the current emergency. You can consult the webinar material here.

Read more - Visit the ARISE website


"EMA has activated its plan for managing emerging health threats" says Guido Rasi, the Agency's Executive Director.
"The new Coronavirus has been declared a public health emergency of international concern by the World Health Organization, and we are drawing on the strong expertise of the European medicines network to provide
fast-track scientific advice and give prompt feedback on any proposed medicine developments”. There are currently no commercially available medicinal products that are authorised to detect, treat or prevent infections with the novel Coronavirus.
EMA is ready to support the medicine developers with all available regulatory tools to advance and expedite the development of effective measures to fight and prevent the spread of this virus. 

Read more - Visit the EMA website


On 30th January 2020, the WHO announced that the COVID-19 outbreak was a Public Health Emergency of International Concern and on 11th March, WHO described the COVID-19 situation as a pandemic.  Up to date data on the international COVID-19 emergency can be consulted on the WHO Health Emergency DashboardThe WHO is making many efforts to support the countries involved in the COVID-19 pandemic. Among its activities, technical guidance for COVID-19 has been published on its website. Moreover, to sustain the preparedness and response to the emergency, WHO provides with WHO Massive Online Open Courses, real-time training courses addressed to health professionals, decision-makers and the public. 

Read more  - Visit the WHO website


Currently, the worldwide priority is to help saving lives during the COVID-19 pandemic, therefore, the availability of a drug and vaccination to treat and prevent the COVID-19 is strongly needed. However, the regulatory agencies, including the European Medicines Agency (EMA), have to make sure the efficacy and safety of the treatments available for the patients for the benefit of public health. All medicines must be authorised before they can be administered to patients. If the benefits of the medicine are greater than the risks, then the drug can be marketed. First, scientists develop a medicine that they think could treat a specific disease. Once it passes the lab tests, it has to be tested on humans through clinical trials to make sure that the medicine is safe and works as expected.

Read more


COVID-19 pandemic is a health emergency involving all the world and the rare disease community is not excluded! Rossella Conte, researcher at Fondazione Benzi, who has always been involved in activities related to the haemoglobinopathies, underlines that among the patients exposed to major risks there are patients with rare inherited haemoglobinopathies in need of blood transfusions, who can often have additional complications that expose them to a major risk. Until now, for these patients we do not have a solid experience on the infection and any declaration/prevision is just a hypothesis. Therefore, Rossella Conte underlines the necessity to protect all the patients with haemoglobinopathies providing them with a continuous treatment with blood transfusions and iron chelators, ensuring them their right to life saving treatment, now threatened by the serious difficulty experienced by donors as well, due to the infection! 

Read more


Fondazione Gianni Benzi is actively committed in several activities involving African partners. Therefore, we would like to report an update on the current COVID-19 pandemic in Africa that already has to face other crucial health emergencies. The virus SARS-COV-2 has quickly spread within weeks across the whole continent.
Governments and health authorities across the continent are striving to limit widespread infections. Dr Matshidiso Moeti, the World Health Organization (WHO) Regional Director for Africa, underlined: "We are working with the governments to better understand what is happening on the ground, but this is worrisome as countries in these subregions often have particularly
fragile health systems.” Crucial medical equipment needed to respond to COVID-19 is lacking in many countries.

News on Fondazione Gianni Benzi onlus initiatives and projects updates

Keeping updated on what happens around us enables the scientific sector to carry out concrete and consistent actions.
To this end, Fondazione Gianni Benzi aims to share with the community useful news on its areas of interest and the related advancements, including the fields of
haemoglobinopathies and more in general of the rare disease, the paediatric research, the regulatory sciences as well as the empowerment of the citizens and patients in the research sector.
Moreover, Fondazione Benzi improved its resources available on the website by including the new specific section
“Training and education” where you can consult and download some useful material provided during the last Foresight Training Courses.
Discover more on our activities by reading the following news:


Among its missions, Fondazione Gianni Benzi is working on Sickle Cell Disease (SCD), a serious inherited disease affecting also children with more than 300,000 annual births in collaboration with researchers coming from African countries, where the disease incidence is very high.
In this framework, a plan, including several activities and
Information, Education and Communication (IEC) materials, tailored on the target audience in Nigeria, has been drafted to implement the awareness of the disease in this country. Moreover, the Foundation dedicates a lot of efforts to involving patients and children in the research process.
To this end, we started a collaboration with the 
Young Persons Advisory Group in Bari (KIDS BARI), composed by young people, both patients and healthy youngers, asking them to collaborate in SCD initiatives.

Read more 


Fondazione Gianni Benzi is involved as project coordinator, in the African Research and Innovative Initiative for Sickle cell Education - ARISE project that aims to improve the overall SCD outcomes in Nigeria, Kenya and Lebanon, where the disease incidence is very high, establishing a multidisciplinary staff exchange programme between researchers among partners.
One of the missions carried out by Fondazione Gianni Benzi is to transmit accurate and reliable information of interest of patients and citizens promoting their active participation in the management of their disease.
In this framework, the Foundation has developed the booklet “Living well with Thalassaemia” and currently is working on the booklet 
“Living well with Sickle Cell Disease in collaboration with the ARISE consortium, to increase the awareness of the African communities about the SCD.

Read more


This year the Rare Disease Day was held on 29th February 2020, the rarest day of the year dedicated to raising awareness on rare diseases that affect more than 300 million people worldwide. The rare disease community and its supporters, also including Fondazione Gianni Benzi came together to share the message: Rare is many worldwide. Rare is strong every day. Rare is proud everywhere!
Thousands of events such as family fun days, sporting events, fundraisers, scientific conferences, art exhibitions, policy events and much more took place across the world in over 100 countries! Fondazione Gianni Benzi contributed to the initiative through a social campaign on rare diseases supporting a more equitable access to diagnosis, treatment, care and social opportunity.

EPTRI – Open Meeting, April 2020

ID-EPTRI (European Paediatric Translational Research Infrastructure) is a European funded project aimed to design the framework for a new research infrastructure (RI) dedicated to preclinical and translational paediatric research for developing new paediatric medicines. On April 2-3, 2020 the EPTRI Open meeting was held online due to the COVID-19 emergency. It was attended by more than 150 participants and was the occasion to present the project challenges and achievements reached so far. The meeting gave an interesting overview on the next steps and the scientific topics, specifically addressed to the paediatric population health.

Latest publications by the researchers from Fondazione Gianni Benzi


Researchers and decision makers have become increasingly aware that the experimental data alone are insufficient to address decisions fully.
Real World Data help to provide a more complete picture of care and have the potential to improve quality of care, also in terms of efficacy and safety of the treatments. Annalisa Landi, researcher at Fondazione Gianni Benzi, is actively involved in activities related to the health data. She is member of the TEDDY Network Health data Working Group (WG) and in this framework, she collaborated with the WG 3 ‘Data Sources and Multi-source Studies’ of the ENCePP on the manuscript “Different strategies to execute multi-database studies for medicines surveillance in real world setting: a reflection on the European model” that was recently published on the Clinical Pharmacology & Therapeutics Journal.

Read more


Clinical data reuse for research purposes is relevant to address the unmet clinical needs, but at the same time, secondary use of personal data is particularly challenging, especially in the case of research involving vulnerable populations, such as children. As a human being, a child must also be guaranteed all the rights of a person, including the right to the protection of personal data! The EU General Data Protection Regulation (GDPR) enables a new legal framework for the data protection and personal data processing. In this framework, the article “The Secondary Use of Paediatric Data Under the EU General Data Protection Regulation: Looking for New Safeguards for Research“ was published on the European Pharmaceutical Law Review by Annagrazia Altavilla, from Espace Éthique PACA CORSE – France, in collaboration with Jean Herveg from Namur University, Viviana Giannuzzi, Annalisa Landi and Adriana Ceci from Fondazione Gianni Benzi.

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