• Sun. Oct 24th, 2021

Rare diseases, from 29 May the ‘Dialogues on haemophilia A’ are back

Byeditorial

May 17, 2021

In Italy there are 10,627 patients with rare congenital hemorrhagic diseases: of these, 4,179 are suffering from haemophilia A and 898 from haemophilia B, according to the latest data updated by the National Register of Congenital Hemorrhagic Coagulopathies of the Higher Institute of Health (ISS). Hemophilia is the best known hemorrhagic coagulopathy, a disease of genetic origin that causes a defect in blood clotting. It mainly affects males, while women can be healthy carriers. This does not mean that this condition concerns only men: the role of caregiver of companions, wives, mothers and daughters cannot be ignored, as well as the doubts about the decisions regarding motherhood experienced by young carriers of genetic alterations that could be transmitted to children. their children. Finally, not everyone knows that in Italy there are also about 40 women with symptomatic haemophilia. These and other aspects will be discussed in the first of the six webinars ‘Dialogues on haemophilia A’, online meetings designed to allow doctors and patients to dialogue in an informal atmosphere on pathology and innovative therapies. The first event of 2021 on the role of female caregivers and healthy carriers of a typically male pathology is scheduled for Saturday 29 May, from 10 to 12, with the virtual event entitled ‘The woman in the’ male ‘world of haemophilia ‘, organized by SMC media with the patronage of FedEmo (Federation of Haemophilic Associations), Fondazione Paracelso Onlus and numerous patient associations, for years at the forefront in promoting scientific research projects and social interventions in order to improve assistance to people with haemophilia. The aim of the initiative, born in 2018: to inform patients about the new therapies currently available for haemophilia A through direct dialogue with doctors and experts, in light of the therapeutic innovations that are changing the paradigm of disease management. “The condition of being a carrier of haemophilia – says Cristina Ielo, carrier of the disease – has a significant impact on a woman’s life, not only in the emotional sphere. Putting hesitations and fears in the spotlight facilitates the relationship with clinicians on an intimate topic that needs accurate and objective information “.Not just women. The second appointment is in fact dedicated to young haemophiliacs. Scheduled for June will focus on the needs and problems experienced by a new generation of patients. Thanks to the advancement of therapies, prophylaxis now allows children affected by the disease to lead a dynamic life with very few restrictions. Even without experiencing the disabilities of the patients who preceded them, young haemophiliacs continue to struggle to communicate their condition. During the webinar the topic will be addressed thanks also to the intervention of a psychologist expert in youth and communication. Also with this 2021 edition, the second in virtual mode due to the pandemic, the ‘Dialogues on haemophilia A’ initiative will make haematologist doctors available to patients whose task will be to answer all their questions, dispelling false myths and fake news about the disease. The free and informal meetings will be held on the Zoom platform. To access it, you need to register on the site: www.dialoghiemofilia.it and follow the instructions that you will receive via email. The format of the initiative is based above all on the free questions posed by patients who over the years have expressed the need for greater dialogue with haematologists and the desire to ask them all the questions they do not always have the opportunity to ask during visits. In this sense, ‘Dialogues on haemophilia A’ is to all intents and purposes a project wanted and developed by patients for patients, with the support and non-conditioning contribution of Roche. For information on the program of meetings: www.dialoghiemofilia. Before the Covid-19 emergency, the initiative had stopped in 2018 and 2019 in different cities: Rome, Genoa, Florence, Pescara, Padua, Reggio Calabria, Turin and Bari.

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