Video recording available on "Tell me your story: Patients and physicians open dialogue on Thymic Tumors"

It's now available the video-recording of "Tell me your story: Patients and physicians open dialogue on shared experiences on thymic tumors." with a video index available.

This 2nd webinar for PATIENTS with EURACAN ERN physician expert on Thymic Tumors (TET)  that was organized on May 10th 2023 during Thymic Malignancy Awareness Month (#TNAM).

This webinar involved the major physician experts on thymoma and thymic carcinoma of the Euracan ERN network.

Other webinar on thymic malignansies (thymoma and thymic carcinoma) organized during TNAM are available on ITMIG website

Please fill the below form and you'll receive the video-recording

    First Name*

    Last Name*

    Email Address*

    City*

    Country/Region*

    Zip/Postal Code*

    State/Province*

    Phone*

    You are*


    Information you provide when registering will be shared with the account owner and host and can be used and shared by them in accordance with their Terms and Privacy Policy.

    Pursuant to the GDPR 2016/679, I declare that I have read the information for the processing of personal data and consent to their processing only and exclusively to the extent necessary for the pursuit of the purposes (the absence of consent affects the possibility of receiving information).
    I authorize the TUTOR Association to processing of personal data, for communications related to advocates activities and international meeting.
    Yes, I agree

    by Michi

    A time for patients to meet and share

    A time for patients to meet and share (online).

    Where patients and family members can meet, understand, find one another, share experiences, feelings, needs and all they are experiencing.
    Also gather needs and ideas so that TUTOR can help all those who cope with a thymoma or a thymic carcinoma.

    We’ll meet once a month, online, the 3° Thursday at 5-6 PM central europe time (beware of time zone), starting from May 18th
    The meeting will be held in English.


    Calendar 2023
    June 15th at 5pm CET
    July 20th at 5pm CET
    September 21st at 5pm CET
    October 19th at 5pm CET
    November 16th at 5pm CET
    December 21st at 5pm CET

    To participate, fill the form and you’ll receive a zoom’s link.

      First Name*

      Last Name*

      Email Address*

      City*

      Country/Region*

      Zip/Postal Code*

      State/Province*

      Phone*

      You are*


      Information you provide when registering will be shared with the account owner and host and can be used and shared by them in accordance with their Terms and Privacy Policy.

      Pursuant to the GDPR 2016/679, I declare that I have read the information for the processing of personal data and consent to their processing only and exclusively to the extent necessary for the pursuit of the purposes (the absence of consent affects the possibility of receiving information).
      I authorize the TUTOR Association to processing of personal data, for communications related to advocates activities and international meeting.
      Yes, I agree

      I authorize the TUTOR Association, free of charge, also pursuant to art. 10 and 320 cod. civ. and art. 96 and 97 law 22.4.1941, n. 633, Law on copyright, the use of photos or videos taken by operators or persons appointed by the Tutor Onlus association, for communication, publication and / or dissemination in any form on the website www.tumoritoracicirari.it, on social networks and on any other means of dissemination (newspapers or local newspapers), as well as authorizing the conservation of the photos and videos themselves in the IT archives of the same and acknowledges that the purpose of these publications are merely of an informative and possibly promotional nature and for institutional use. of the association, as well as authorizing the conservation of the photos and audio / video themselves in the computer archives of Associazione Tutor Onlus.
      Yes, I agree

      by Michi

      CALENDARIO ATTIVITA'- MAGGIO MESE DELLA SENSIBILIZZAZIONE SUI TUMORI DEL TIMO #TNAM 2023

      Maggio è il mese della Sensibilizzazione dei Tumori del Timo, #TMAM (Thymic Malignansies Awareness Month)

      Anche quest’anno saranno varie le attività che saranno organizzate a livello internazionale: un calendario con tutte le attività è presente sul sito #ITMIG (International Thymic Malignansies Interest Group), la società scientifica internazionale su https://itmig.org/tmam/.

      In italia queste le attività che si svolgeranno:

      • 10/5/23 alle 13-18 (CET), un webinar in lingua inglese dedicato ai pazienti  su “Tell me your story: Patients and physicians open dialogue on shared experiences on Thymic Tumors”, secondo webinar per pazienti con medici esperti sui tumori del timo della rete europea EURACAN-ERN. Alla sessione generale in inglese seguiranno delle sessioni in cui i pazienti potranno rivolgere delle domande nella propria lingua ai medici operanti nella loro nazione. Sono organizzate sessioni per Francia e Belgio. Ulteriori sessioni in base alle richieste dei pazienti.
        TUTOR dal 2021 è E-PAG         (European Patient Advocate Group) in EURACAN ERN, cioè rappresentante e voce dei pazienti europei nella rete EURACAN, che si occupa dello studio e della ricerca dei Tumori Rari solidi dell’Adulto.
        Partecipazione gratuita previa iscrizione su https://www.tumoritoracicirari.it/2023/03/21/euracan-10-5-2023/

       

      • sempre il 10/5/23 , dalle 17.00 alle 18.00, il network scientifico TYME per i tumori del timo, ha organizzato con AIOM per oncologi un webinar “ Il trattamento dei tumori del timo: parole chiave rete e multidisciplinarietà”, rivolto agli oncologi con un focus su chirurgia e radioterapia e sul lavoro portato avanti da TYME. Per iscrizioni e agenda https://www.aiom.it/eventi-aiom/2023-merc-il-trattamento-dei-tumori-del-timo-parole-chiave-rete-e-multidisciplinarieta/

       

      • Il 26/5/2023 alle 16:00 un webinar organizzato da TYME “Tumori del Timo: il network TYME e l’importanza di un approccio multidisciplinare” con lo scopo di condividere insieme ai pazienti con timoma e carcinoma timico ed ai loro familiari l’organizzazione, il ruolo e gli obiettivi del network TYME e della nostra associazione TUTOR, e di presentare l’importanza di un approccio multidisciplinare per la gestione delle neoplasia timiche.
        Partecipazione gratuita previa registrazione su https://www.tumoritoracicirari.it/2023/04/20/tyme-incontra-i-pazienti/).

      by Michi

      28 APRILE: GIORNATA MONDIALE PER LE VITTIME DELL'AMIANTO

      28 APRILE: GIORNATA MONDIALE PER LE VITTIME DELL’AMIANTO
      In questa giornata siamo orgogliosi di partecipare al Congresso “MESOTELIOMA PLEURICO – Percorsi di Cura nelle aree ad alta incidenza” rappresentando come associazione le istanze dei pazienti con mesotelioma pleurico e dei loro famigliari.
      Il Congresso si svolgerà a Broni – Sala Civica “Pietro Acampora” – Biblioteca Comunale

      by Michi

      2nd Webinar for PATIENTS with EURACAN ERN physician expert on thymic tumors - May 10th, 2023

      2nd Webinar for PATIENTS with EURACAN ERN physician expert on THYMOMA and THYMIC CARCINOMA

      Tell me your story:
      Patients and physicians open dialogue on shared experiences.

      This webinar is aimed to share Patient’s experiences and information on thymic tumours, thymoma and thymic carcinoma, giving patients and caregivers the opportunity to have information directly from physician’s experts on this rare cancer. It also aims to promote discussion among paramount multidisciplinary speakers and promote collaboration between patient and physicians all over Europe.

      The plenary session in english, will be followed by second session “country specific” where patients will have the opportunity to discuss and interact with their country expert on Thymic tumors (TET), thymoma and thymic carcinoma in their own language.

      Patients with thymic tumors, as 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 the 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) at EURACAN for rare thoracic tumors. TUTOR, as E-PAG, is the patients voice collaborating closely with ERN’s coordinator and physicians to enhance access to care and foster research.

      Agenda

      Soon available the conference recording!

      by Michi

      Video recording of PATIENT'S webinar with EURACAN physician expert on TET- Update on Thymic Tumors and future prospectives

      It's now available the video-recording of " Update on Thymic Tumors and future prospectives", the 1st webinar for PATIENTS with EURACAN ERN physician expert on TET that was held on the 23/5/2022 during Thymic Malignancy Awareness Month.
      This webinar involved the major physician experts on thymoma and thymic carcinoma of the Euracan ERN network.

      The video can be watched  HERE with an index available.

      Other webinar on thymic malignansies (thymoma and thymic carcinoma) are available on ITMIG website

      If you are interested in what TUTOR is doing with  EURACAN ERN network, please contact us 

       

      https://youtu.be/VapBfuhaqng

       

      by Michi

      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.

      DOWNLOAD FULL PROGRAM

      Fill in the form and register for free!

        First Name*

        Last Name*

        Email Address*

        City*

        Country/Region*

        Zip/Postal Code*

        State/Province*

        Phone*

        Which country specific session would you like to attend?*

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

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

        You are*

        Questions & Comments

        Information you provide when registering will be shared with the account owner and host and can be used and shared by them in accordance with their Terms and Privacy Policy.

        Would you like to be contacted for more information about our projects?*

        Pursuant to the GDPR 2016/679, I declare that I have read the information for the processing of personal data and consent to their processing only and exclusively to the extent necessary for the pursuit of the purposes (the absence of consent affects the possibility of receiving information).
        I authorize the TUTOR Association to processing of personal data, for communications related to advocates activities and international meeting.
        Yes, I agree

        I authorize the TUTOR Association, free of charge, also pursuant to art. 10 and 320 cod. civ. and art. 96 and 97 law 22.4.1941, n. 633, Law on copyright, the use of photos or videos taken by operators or persons appointed by the Tutor Onlus association, for communication, publication and / or dissemination in any form on the website www.tumoritoracicirari.it, on social networks and on any other means of dissemination (newspapers or local newspapers), as well as authorizing the conservation of the photos and videos themselves in the IT archives of the same and acknowledges that the purpose of these publications are merely of an informative and possibly promotional nature and for institutional use. of the association, as well as authorizing the conservation of the photos and audio / video themselves in the computer archives of Associazione Tutor Onlus.
        Yes, I agree

        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