Webinar for PATIENTS with EURACAN ERN physician expert on thymic tumors- 23/5/2022

1st Webinar for PATIENTS with EURACAN ERN physician expert on THYMOMA and THYMIC CARCINOMA

Update on Thymic Tumors and future prospectives

This webinar is aimed to share information and knowledge on thymic tumors giving patients the opportunity to have information directly from experts. It also aims to promote discussion among paramount multidisciplinary speakers and promote collaboration between patient and physicians all over Europe.

The second session will be held “country specific” and will give patients the opportunity to discuss and interact with their country expert on Thymic tumors in their own language.

Patients with a thymoma or thymic carcinoma face several problems such as having limited information about the disease or reference centers; difficulty in making a timely and appropriate diagnosis, resulting in delayed or inadequate treatments; limited access to appropriate clinical expertise and limited access to available treatments.
EURACAN ERN is a network of European Healthcare Providers with expertise in the management of rare adult solid cancers as thymoma and thymic carcinoma. Thanks to EURACAN’s structure, clinicians and researchers across Europe can share expertise, knowledge and resources.
European Reference Networks (ERNs) are based on the founding principle of a patient-centered approach. The contribution and perspective of patients and their representatives is key to support the mission of ERNs in improving the quality and standard of care and the clinical research available for people living with a rare, complex disease.
TUTOR (rare thoracic tumors) is the Italian non-profit organization for patients with thymic tumors and mesothelioma and is E-PAG (European Patient Advocacy Group) E-PAG is the patients voice collaborating closely with ERN’s coordinator and physicians to enhance access to care and foster research.

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    General session - Any questions for speakers? Please questions in english

    Country specific session - Any question for speakers? Please questions in english

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    by Michi

    Si parla di Mesotelioma (e TuToR) con Dr.ssa Federica Grosso su Radio3 Scienza!

    Oggi su Radio3 Scienza - L'onda lunga dell'amianto

    Marco Motta intervista Federica Grosso, responsabile della Struttura Mesotelioma dell'Azienda Ospedaliera di Alessandria.

    In alcune aree del nostro paese, ci sono tumori rari che poi così rari non sono. Casale Monferrato, Broni e Bari, ma anche Genova, La Spezia e Monfalcone sono "zone rosse" in Italia per l'incidenza di casi di mesotelioma maligno, un tumore dovuto nell'80% dei casi all'esposizione di amianto, che insorge dopo decenni dall'esposizione. Nonostante la legge 257/92 abbia messo al bando l'uso dell'amianto in Italia, ogni anno si continuano a registrare oltre 1.500 nuovi casi di mesotelioma. A che punto siamo con le diagnosi precoci? Quali terapie sono state sviluppate in questi anni? E quanto conta il supporto delle associazioni di pazienti, come TUTOR - Associazione TUmori TOracici Rari? Lo chiediamo all'oncologa Federica Grosso, responsabile della Struttura Mesotelioma dell'Azienda Ospedaliera di Alessandria.

    Per ascoltare l'intervento  https://www.raiplaysound.it/audio/2022/05/Radio3-Scienza-del-04052022-877e8c6d-7ffb-404a-ba4d-288bea57d2d8.html

    by Michi

    Si parla di TUTOR su Affari Italiani

    Oggi su Affari Italiani rispondiamo ad un famigliare di un paziente con tumore toracico raro

     

    “Ho un parente stretto con un tumore toracico raro, ci sono centri di riferimento in
    Europa?”, ecco la risposta della ns presidente su Affari Italiani

    Buona lettura!!!

    Leggi l'articolo completo

    by Michi