The Italian Association against leukemia, lymphomas and myeloma: “Thanks to the many advances made today, patients are more likely to recover or live with a haematological neoplasm for years”
Are approximately 30 thousand every year in Italy new cases of blood cancer: thanks to the many advances made today, patients are more likely to recover or live with the disease for years, maintaining a good quality of life. Supporting patients and their families and promoting scientific research to make increasingly effective therapies available are objectives that are also achieved thanks to the concrete alliance betweenItalian association against leukemia, lymphomas and myeloma (Ail) and Italian hematology. With these premises, to remember both Ail’s commitment and the successes achieved by science, we celebrate, as every year, the June 21st the 17th National Day for the fight against leukemia, lymphomas and myeloma promoted by the AIL under the high patronage of the President of the Republic and permanently established by the Council of Ministers. “For over 50 years Ail has been supporting patients and caregivers and constantly finances research on leukemia, lymphomas, myeloma and other blood cancers throughout Italy – he says Pino Toro, national president of the Association -. Thanks to research, therapies have become increasingly effective and targeted and others will arrive in the near future “.
Toll-free number for patients and caregivers
As per tradition, on the occasion of the National Day the Ail toll-free number for haematological problems is active from 8 to 20 (800.22.65.24), completely free and available to patients and family members. Eight of the most important Italian haematologists and a group of specialists will be online all day to offer advice on the disease and on the therapy centers in the country, and to respond concretely to the anxieties, fears and doubts of who is struggling with a blood cancer. The same toll-free number is available all year round, always free of charge, from Monday to Friday from 3 to 5 pm to offer personalized advice. Ail has also expanded the type of consultation available online: on Mondays, Thursdays and Fridays hematologists respond to doubts about pathologies; on Tuesday a rights expert responds on the matter of concessions and income support; and on Wednesdays a psychologist offers listening and support to those who need it.
The virtuous alliance
Ail funds research with 114 projects active in our country and supports the Gimema «Franco Mandelli» Foundation (Italian group of adult hematological diseases), which promotes independent research and works to identify the best diagnostic and therapeutic standardsi for haematological diseases and, thanks to scholarships and contracts, contributes to the training and updating of doctors, biologists, nurses and laboratory technicians. «With a view to sharing, Ail, through Gimema, has chosen to cooperate with the Research Centers and to give access to research data; moreover, it works so that patients can access innovative drugs, through participation in clinical trials – explains Pino Toro -. All this translates into a virtuous alliance that leads to making more and more effective therapies available and that also offer a good quality of life for the patient ». There are 120 hematology centers throughout the country that operate according to shared standards and protocols, in order to ensure patients a precise, safe and uniform diagnosis throughout Italy. “The protocols are established between Gimema and the best Italian specialists, implementing innovative research criteria, and this leads to the achievement of an equally important goal: training and continuous updating of health professionals – remember Marco Vignetti, president of the Gimema Foundation and national vice president of Ail -. These protocols are applied in all 120 Centers of the hospital network, ensuring that all patients receive the same therapies and care in a homogeneous way. Given the increased availability and complexity of therapies, they were then created to meet this need about 20 years ago eight working groups, each dedicated to a different pathology or area, including quality of life. Diagnosis and monitoring protocols of therapy progress together with constantly updated therapeutic protocols make it high the quality of assistance offered by Gimema in the Centers belonging to the National Health Service ».
Third sector
The world of volunteering over the years has evolved and structured to be at the side of patients at every moment of the path of the disease. “The third sector is constantly evolving to better respond to research progress and social and cultural changes – adds President Ail -: in Italy there are over 350 thousand organizations that employ over a million people, flanked by nearly six million women and men who voluntarily and free of charge offer their time and help to those in need ». Today we are witnessing a transformation of the third sector as a recognized builder of solidarity and social wealth. “We should talk about the” first sector “, because the work of these subjects is a fundamental work, not merely to help others but necessary to support and make both the market and the State work well – underlines Stefano Zamagnipresident of the Pontifical Academy of Social Sciences and professor of Political Economy at the University of Bologna -. It is a question of completely reversing the perspective. In recent years, the vision has been changing a lot following the approval of the third sector code which, for the first time in Italy, attributes to these bodies a role not only of execution of what the public sector has decided, but of co-programming and co-design. It is a great revolution: non-profit organizations are no longer the spare wheel of the systemeven if the road ahead is still long and complex ».
Young researchers
On Monday 20 June an AIL delegation was received in audience at the Quirinale by the President of the Republic Sergio Mattarellaa special occasion to illustrate the association’s numerous projects, achievements, future challenges, and the commitment and closeness of over 15 thousand volunteers during the two years of the pandemic to haematological patients. At the basis of scientific progress there are researchers, often young people with different skills and specializations, who must be constantly trained and updated and who also work for long periods on projects, for this it is necessary to support them economically. “With its 82 provincial sections present throughout the Italian territory, Ail also supports Hematology Centers with awards and scholarships intended for young researchers and with the purchase of innovative instruments to guarantee research and advanced diagnostics, essential for the optimization of the patient’s personalized therapeutic path – he concludes Giorgina Mirror, Professor of Hematology and member of the National Ail Scientific Committee -. Young researchers today work in teams made up mainly of biologists, biotechnologists, doctors, bioinformaticians and data managers: almost a thousand young people have been supported by Ail in recent years. Furthermore, every year, on the occasion of the national congresses of the scientific societies Sie (Italian Society of Hematology) and Sies (Italian Society of Experimental Hematology), awarded scientific projects, carefully selected on the basis of rigorous criteria; the projects presented by the young researchers are always numerous and of great scientific importance ».
June 20, 2022 (change June 20, 2022 | 18:44)
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