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
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We’re so proud to have these extraordinary doctors at our side 🙏
@GiacomoGBaldi @marcovitellaro @sandro_pasquali @giuliapersoneni @Enrikared @FerreriMarilena
Amazing day with Desmoid tumor community for @sarcomapatients annual meeting in Rome
#togetherwearestronger 🤙
@desmoide @carolkanti @Enrikared @giuliapersoneni
👏👏👏
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
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🙏
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
👏👏👏 @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
Thank you to @desmoide , @sarcomapatients , @DTRFoundation for helping us to make this important event possible! #desmoidtumor #globalconsensusmeeting2023
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
Desmoid Foundation ONLUS - Italia retweeted
Wonderful multidisciplinary discussions today Global #desmoid consensus meeting @IstTumori in Milan @DTRFoundation @DesmoidI @desmoide @CureSarcoma @ItaSarcomaGroup
Desmoid Foundation ONLUS - Italia retweeted
And after the successful day of the consensus meeting of desmoid tumor working group, today is the Italian desmoid patients’ day at @IstTumori @ChirSarcomi_INT Pregnancy, Surveillance, Cryotherapy, New drugs and more. @ctosociety @DesmoidI
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!
Desmoid Foundation ONLUS - Italia retweeted
✏️Novità: dal 15 gennaio anche i Pazienti presi in carico dalla Chirurgia dei #Sarcomi potranno usufruire del servizio di #telemedicina 🖥️
Per maggiori informazioni in merito: istitutotumori.mi.it/pagina-…
@IstTumori @alegronchi @FioreDoc #ChiaraColombo @radaste @DCalleMD
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.
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
Desmoid Foundation ONLUS - Italia retweeted
Desmoid tumors: Active surveillance in desmoid fibromatosis. bit.ly/3SrAGBB
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…
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 (pubmed.ncbi.nlm.nih.gov/3524…) at the DTRF Int'l Desmoid Tumor Research Workshop. Register: DTRF.org/weekend #DTRFWeekend2022
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!
** 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:
desmoidfoundation.org
#desmoid #RareDisease
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.
