Share4Rare is a collective awareness platform of patients, caregivers, researchers and other stakeholders involved in the Healthcare of Rare Diseases (RD). Based on a socially innovative approach, and building on citizen science and collective intelligence, we will engage and connect all the relevant stakeholders, towards the improvement of the quality of life, the management and the collection of scientific knowledge.
The platform will be built around three important pillars: care, education and research. Our Collective Awareness Platform will take advantage of the high-motivated group of citizens (from patients to researchers, from volunteers to public health representatives and health professionals) linked or not to rare diseases, and their expertise. It will build on existing knowledge and initiatives, and will ensure a space for debate and co-creation, and a space for further research. S4R will be based on the shared open data, and on the priorities set collectively.
Collective intelligence from patients and families, democratic and transparent participation and a secure environment focused on three layers of interaction will ensure a platform to put in value citizen science that is needed to promote new research initiatives with a patient centred approach.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 780262.
Childhood leukaemia is particularly common in Latin American and Caribbean countries and the percentage of children who survive the disease is significantly lower than that of patients in Europe. Depending on the type of leukaemia and the country, survival rate of childhood leukaemia is around 50 – 80% in Latin America and the Caribbean regions, in sharp contrast to 80 – 95% rates in Europe. This significant difference may be due to several factors beyond the biology of the leukaemia, which may include a limited access to healthcare, the lack of diagnostic resources and a lack of research.
The European Commission has funded this project, led by Dr. Mireia Camós of SJD Barcelona Children’s Hospital. CLOSER team will work to study and make recommendations to improve the diagnosis and prognosis for children with leukaemia in Latin America, thus narrowing the survival gap between the two regions. CLOSER project was selected out of a total of 48 applications from research sites and hospitals across Europe and is the only paediatric funded project in this specific call.
Over the next five years, European experts from Austria, Italy, the United Kingdom, the Czech Republic and Spain will work alongside researchers from Argentina, Chile and Uruguay in a large epidemiological study that will provide a better understanding of the different subtypes of leukaemia diagnosed in Latin America. This information is important in order to apply risk – directed treatments to each individual patient, thus improving their prognosis and minimizing undesirable side effects.
The project will also promote initiatives to simplify current diagnostic procedures and make them affordable, so they can be easily applied in those countries with fewer resources. CLOSER project also includes a training program to help healthcare professionals develop the required skills in the best available diagnostic technologies. In addition, CLOSER project will directly engage patients in research (“patient empowerment”) to get to know their real needs: not only those related to health, but also those relating to the educational and psychosocial requirements of the patients, their families and care givers.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 825749.
The strategic goal of DISCOvERIE is to provide an enhanced understanding on IBS (Irritable Bowel Syndrome) and comorbidities and their risk factors. This will support a better diagnostic approach in clinical practice and facilitate the development of evidence-based medicine approaches leading to targeted therapy and personalized medicine in the future.
The project will determine mechanisms of intestinal and central nervous system function underlying comorbidities in IBS and their interaction with the peripheral microbiota-gut-brain axis and identify biomarkers specific for prevention, diagnosis and therapy of comorbid and multi-comorbid IBS through integrative data analysis, validate them and pre-commercialize the non-invasive predictive and therapeutic tests. By identifying the causative mechanisms of comorbid IBS and providing biomarkers for reclassification of this broad spectrum of disorders (anxiety, depression, fibromyalgia and chronic fatigue) DISCOvERIE will lead to personalized medicine approaches.
The mission of DISCOvERIE (Development, dIagnosis and prevention of gender-related Somatic and mental COmorbiditiEs in iRritable Bowel Syndromme In Europe) is to develop a personalised medicine solution to the problem by providing a thorough clinical and psychosocial characterization of IBS patients afflicted by mental and non-mental comorbidities with a particular focus on age and sex/gender-related differences, and lifestyle.
Finally, DISCOvERIE will translate specific comorbid IBS aetiological and physiopathological knowledge into clinical guidelines to improve prevention, diagnosis, prognosis, therapy development, and management of co- and multimorbidities. These guidelines will be delivered direct to the European healthcare system.
By incorporating a user board involving national representatives of patient associations along with renowned specialists in the field, European healthcare experts and large pharma and SME representatives into our management structure we aim to create a European Reference Network for comorbid IBS (COIBSnet) involving healthcare providers across Europe.
In conclusion, findings of this project will directly impact patients’ and relatives’ quality of life.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No. 848228) and will last 5 years (2020-2024).