Desmoid Foundation ONLUS - Italia
@DesmoidI
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Desmoid Foundation ONLUS is a non-profit org that connects patients with desmoid and Gardner's syndrome with the competent scientific community.
Milano, Lombardia
Joined November 2018
We’re so proud to have these extraordinary doctors at our side 🙏.@GiacomoGBaldi @marcovitellaro @sandro_pasquali @giuliapersoneni @Enrikared @FerreriMarilena
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Amazing day with Desmoid tumor community for @sarcomapatients annual meeting in Rome .#togetherwearestronger 🤙.@desmoide @carolkanti @Enrikared @giuliapersoneni
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👏👏👏.
Lots of scientific, educational, economical and political activities to improve knowledge and quality of care of sarcoma patients in Italy and more! The future is bright! @ctosociety @myESMO @ASCO @IstTumori @sarcomapatients @EheItalia @Rete_Sarcoma_It @DesmoidI.
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Special thanks to @PamelaMusaio for the book explaining Rare tumors and inclusivity to kids in the schools and thanks to @SarcomaUniTo lab for the fantastic work carried out with passion and excellence! 👏👏👏.
Today we had the pleasure to host in Turin the Desmoid Foundation @DesmoidI w/ @PamelaMusaio. Morning w/ secondary school kids (inclusion/diversity project, as applied to rare tumors: we wrote a book!) + afternoon visiting our lab @SarcomaUniTo . Huge thanks for your support🙏
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A beautiful best practice work of collaboration between physicians and PAOs @FioreDoc @alegronchi @ChirSarcomi_INT 💪.
Great work from @FioreDoc and colleagues on pregnancy in patients with desmoids! Limited risk of progression even in patients with active disease. Really useful information for clinical practice. We’ll done!.@alegronchi @ChirSarcomi_INT @SarcomaUniTo @DesmoidI
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👏👏👏 @ChirSarcomi_INT.
Chiara Colombo @ChirSarcomi_INT @IstTumori presented results if ctDNA in diagnosis and surveillance of #desmoid tumors at @ctosociety #ctos2023 #CTOSTweeTOS @DesmoidI @DTRFoundation @SoMe4sarcoma
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Thank you to @desmoide , @sarcomapatients , @DTRFoundation for helping us to make this important event possible! #desmoidtumor #globalconsensusmeeting2023.
@alegronchi Hybrid meetings happily still exist and although not ideal during a consensus meeting, it makes global input possible. The people behind the scene do great work to enable this. Thanks everyone! @DesmoidI #Fondazione IRCCS @IstTumori @alegronchi and Bernd Kasper
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RT @jeffreyfarma: Wonderful multidisciplinary discussions today Global #desmoid consensus meeting @IstTumori in Milan @DTRFoundation @Desmo….
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RT @alegronchi: And after the successful day of the consensus meeting of desmoid tumor working group, today is the Italian desmoid patients….
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Thank you to @ItaSarcomaGroup to invite us to join more than 60 specialists in #desmoid tumor to speak about #cryoablation, systemic #therapies and #patient perception, #pregnancy and #nirogacestat. We sincerely thank each of these doctors!. #df #isg #RareDisease.
@gi_person offering patients' experience about starting #chemotherapy in #desmoid. So relevant @ItaSarcomaGroup including patient' advocates! @DesmoidI @DTRFoundation.Grazie Giulia! Brava!
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RT @ChirSarcomi_INT: ✏️Novità: dal 15 gennaio anche i Pazienti presi in carico dalla Chirurgia dei #Sarcomi potranno usufruire del servizio….
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A nome di tutti i pazienti, un SUPER GRAZIE a Unobravo | Servizio di psicologia online per questa splendida collaborazione!!!. #unobravo #psicoterapia #psicologia #psicoterapiaoncologica #desmoid #RareDisease.
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Nel mese di dicembre 2022 la Desmoid Foundation ONLUS ha iniziato una collaborazione con Unobravo | Servizio di #psicologia online. Il #sostegno è dedicato ai nostri #pazienti che sentivano l’esigenza di condividere e confrontarsi sulle difficoltà che il tumore #desmoide impone.
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At ESMO2022 Dr. Bernd Kapser showed the good results of #Nirogacestat in #desmoid tumors!. #df #esmo #RareDisease #desmoidfoundation.
Great job Bernd! Very well presented. Nirogacestat determins 40% response rate and 70+% PFS. A new option in the medical armamentarium for #desmoid to be exploited when an active treatment is needed. Of note desmoid more often don’t need any treatment…
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Register to @DTRFoundation Int'l Desmoid Tumor Research Workshop.Dr. @alegronchi will attend and speak about active surveillance in #desmoid tumors. #df #desmoidfoundation #dtrf #.
Dr. @alegronchi, Chair of Sarcoma Service, Dept. of Surgery, National Cancer Institute (Milan), will present on active surveillance in #desmoid tumors ( at the DTRF Int'l Desmoid Tumor Research Workshop. Register: #DTRFWeekend2022
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Thanks to Dr. Chiara Colombo and Dr. Costanza Figura for their participation at the 12th annual conference @sarcomapatients.It was a meeting full of important informations and updates for #desmoid tumor. Thanks to Christina, Michi and all @sarcomapatients staff for organizing it!
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** 𝐂𝐀𝐌𝐏𝐀𝐆𝐍𝐀 𝐒𝐎𝐂𝐈 𝟐𝟎𝟐𝟐 ** . Sono aperte le iscrizioni soci per la Desmoid Foundation ONLUS, a supporto dei pazienti affetti da tumore #desmoide e Sindrome di Gardner❤️. Per saperne di più, visitate il nostro sito web: . #desmoid #RareDisease
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A really interesting topic! We wait for your updates!. #df #desmoidfoundation #dtrf #desmoid #RareDisease #RECIST.
#RECIST is not always the best method to measure treatment outcomes for #desmoid patients. This week, The DTRF hosted its first working group meeting with top #radiologists and pharma partners to identify other imaging features to better evaluate patient outcomes.
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