Finding the missing pieces: Empowering collaboration. Patients and Physicians Unite Against Thymic Carcinoma and Thymoma- May 14th, 2024

Finding the missing pieces: Empowering collaboration
Patients and Physicians Unite Against Thymic Carcinoma and Thymoma

3rd Webinar for PATIENTS with EURACAN ERN physician expert on THYMOMA and THYMIC CARCINOMA

This webinar is aimed to share information on thymoma and thymic carcinoma, giving patients and caregivers the opportunity to have information directly from physician paramount  experts on thymic tumors and to listen to other patient’s experience in coping with Thymic tumors.
It also aims to promote discussion among multidisciplinary speakers and promote collaboration between patient and physicians internationally.

The webinar will be held in english.

This webinar is dedicated to addressing the specific needs and concerns of person affected by thymoma and thymic carcinoma.
Assembled in a virtual space, the webinar offers accessibility to patients worldwide, ensuring that they can participate regardless of geographical location.

Throughout the event, the agenda is crafted to focus on providing answers to the most common questions faced by patients and caregivers: topics such as misdiagnosis, limited access to care, treatment complexities, emotional distress, lack of support resources,
financial strain, and long-term survivorship challenges are all addressed.
By facilitating collaboration among patients, healthcare professionals, and advocacy groups, the webinar aims to accelerate progress in research and treatment while empowering patients to take an active role in their care journey.

A distinguishing feature of the webinar is the inclusion lecture where patients share their personal experiences. These firsthand accounts offer invaluable insights, empathy, and practical advice to others navigating similar challenges, creating a supportive
community environment.
The sessions will provide attendees with practical tools and insights to navigate their condition with confidence.
Additionally, dedicated sessions on finding expert doctors, accessing clinical studies, and standardizing care seek to bridge information gaps and ensure equitable access to quality care for all affected individuals.

Ultimately, the webinar is aimed to serve as a powerful platform for addressing patients and caregivers needs, fostering collaboration, and driving positive outcomes in thymic tumor management on a global scale.

download the agenda

Fill in the following form to register

    First Name*

    Last Name*

    Email Address*

    City*

    Country/Region*

    Zip/Postal Code*

    State/Province*

    Phone*

    Any questions 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 be available to collaborate in setting up a Thymic Tumors patient’s group in your country?*


    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




    Video recording available on "Highlights from 2023 International congress on Thymic Tumor"


    It's now available the video-recording of "Highlights from 2023 International congress on Thymic Tumors”, organized by TUTOR, italian patient's organization, on 16th November 2023 with the partecipation of the following paramount panelist:
    Nicolas Girard, oncologist, Ist. Curie Paris, France
    Paolo Mendogni, thoracic surgeon, Policlinico Milano, Italy
    Andreas Rimner, radiation oncologist, Memorial Sloan Kettering, NY, US

    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



      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 (TETthat 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



        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!


        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