A time for patients to meet and share

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

On the November 16th our “A time for patients to meet and share” will be on “Highlights from 2023 International congress on Thymic Tumors”.

Thanks to the following paramount clinicians, experts on Thymic Tumors (Thymoma and thymic carcinoma), we’ll have the opportunity to know all the 2023 international congress highlights
Dr Nicolas Girard, medical oncologist, Istitut Curie, Paris, France
Dr Paolo Mendogni, thoracic surgeon, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
Dr Andreas Rimner, radiation oncologist, Memorial Sloan Kettering Cancer Center, New York, US

The meeting will be held in English at 5-6 PM central europe time (beware of time zone)

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

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    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

    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.

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      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

      Coronavirus informazioni generali, vaccini e terapie

      Covid: le risposte alle vostre domande

      Cosa sono i coronavirus? Quali le terapie ? Cosa sono gli anticorpi monoclonali?

      Risposta a queste ed altre domande sul Vademecum dell’associazione Salute Donna sul Corona Virus in collaborazione con Associazione IPOP (Insieme per i pazienti di oncologia Polmonare) con Istituto dei Tumori di Milano, IEO, Ospedale Sacco ed ARS Toscana

      LEGGI IL VADEMECUM

      by Michi

      Open Days TUMORI del TIMO: pazienti e medici a confronto

      Qual è il percorso di cura con un tumore del timo?

      Scopriamolo insieme con "OPEN DAYs Tumori del timo: medici e pazienti a confronto" dal 14/7 on line con i massimi esperti italiani di timoma e carcinoma timico.

      Un percorso in 6 tappe, da luglio a novembre, dalla diagnosi alla qualità di vita, in cui impareremo a conoscere meglio la malattia confrontandoci con i medici, fra di noi e coi nostri famigliari.
      Grazie ai medici esperti nella patologia si darà risposta alle domande e necessità di informazioni approfondite e aggiornate, promuovendo la centralità ed il coinvolgimento attivo dei pazienti (patient engagement)

      Nelle 6 tappe “VIRTUALI” si ripercorrerà “il percorso di cura” che ciascun paziente deve affrontare: dalla scoperta del tumore alla qualità della vita.
      Gli incontri si svolgeranno dalle 18.00 alle 20.00 con i seguenti argomenti

      14/7/2020 DIAGNOSI, A CHI RIVOLGERSI, COS’E IL TEAM MULTIDISCIPLINARE
      23/9/2020 TRATTAMENTO CHIRURGICO
      5/10/2020 TRATTAMENTI MEDICI
      19/10/2020 QUALI TERAPIE PER QUALI PAZIENTI E STUDI CLINICI
      02/11/2020 SINDROMI PARANEOPLASTICHE
      16/11/2020 QUALITÁ DI VITA

      Per partecipare e porre le vostre domande (che dovranno avere ricaduta generale e non potranno riferirsi ai singoli casi).
      https://www.tumoritoracicirari.it/open-day-tumori-del-timo/

      by laura abate

      #IOSONOENGAGED

      #IOSONOENGAGED un vademecum per renderci TUTTI sempre più impegnati – e ingaggiati – nella gestione attiva e responsabile della nostra salute .
      In un momento come quello che stiamo vivendo possiamo cambiare le nostre abitudini e i nostri comportamenti dando un contributo fondamentale per limitare la diffusione del CORONAVIRUS
      Siamo tutti chiamati a essere “engaged”, cioè coinvolti attivamente e responsabilmente nelle attività di prevenzione.
      Questo è il messaggio che abbiamo condiviso con, EngageMinds HUB - Consumer, Food & Health Engagement Research Center, Università Cattolica del Sacro Cuore, promotore dell’iniziativa, e con altre Associazioni, per affrontare insieme, con piccoli spunti e riflessioni, questo periodo così delicato

      Approfondisci #iosonoengaged  Vademecum_Emergenza_COVID-19

       

       

       

       

      by laura abate