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/).


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


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

 


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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    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


    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!!!

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