A multi-stakeholder initiative dedicated to putting rare cancers firmly on the European policy agenda
Joined January 2014
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.@rarecancerseurope’s call to action is there: 14 key points to make #rarecancers a commitment in all policies👉ow.ly/pPt850GhOEi
Rare Cancers Europe retweeted
Osteosarcoma remains a disease with an unmet therapeutic need and imperfect risk stratification biomarkers.
In Annals of Oncology, @samuelabbou and coll. report on ctDNA quantification using lpWGS as a prognostic biomarker in the OS2006 phase 3 trial annalsofoncology.org/article…
Rare Cancers Europe retweeted
Perception of cancer by pts is based on organ-of-origin without mechanistic consideration. @AliceFranzoi et al explain why cancer representations should evolve toward comprehensive portraits that include biology. This is a task of the IHU @PrismCenter annalsofoncology.org/article…
Rare Cancers Europe retweeted
In Annals of Oncology, investigators report on a clinico-genomic analyses of 1817 KRAS-mutated lung 🫁 adenocarcinomas, shedding light on genomic alterations 🧬 associated with outcome, towards a clinico-genomic risk stratification annalsofoncology.org/article… #LCSM @DanaFarber
Rare Cancers Europe retweeted
The safety results of durvalumab/tremelimumab/enfortumab vedotin #EMUC22 Alexandra Drakaki. Neoadjuvant triples for the VOLGA randomised trial! Ambitious!! The combo appeared safe with no clear ⬆️ skin, liver or neuro tox. pCRs in 6 downstaging in 9. The R3 is enrolling globally
Rare Cancers Europe retweeted
New 📢 #Salivaryglandcancer: ESMO Clinical Practice Guideline for diagnosis, tx & follow-up. Clinical & pathological diagnosis, staging & risk assessmt, & managemt. Tx algorithms given.
ow.ly/Hr0050LsUPO
@Carlavanherpen @_rarecancer @ERN_EURACAN #rarecancer @ESMO_Open
Rare Cancers Europe retweeted
Risk reduction & screening of cancer in hereditary breast-ovarian cancer syndromes: ESMO Clinical Practice Guideline. Developed by multidisciplinary team incl. patient reps, w/ framework 4 managing clinical setting restricted by limited quality data.
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#HBOC
#RareCancers in all policies: "I know how devastating a rare cancer diagnosis can be as my son, Colin, was diagnosed w/ a #braintumour when he was 24. As a family we felt so isolated, alone & frightened." @KathyOliverIBTA
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#RareDiseaseDay @theIBTA
#RareCancers in all policies: We are in this together, help us shape & develop an infrastructure to support #rarecancer patients across Europe, so they can have the best QoL possible
➡️ow.ly/ia9i50I0R5z
@cci_europe @EP_BeatCancer @EU_Health @SIOPEurope @eurordis @cancereu
#RareCancers in all policies: All patients w/ rare cancer should be provided w/ survivor care plan that looks not only at tx but the whole picture of living with a rare cancer @HansScheurer @MyelomaEurope President, on improving #rarecancer pts #QoL
ow.ly/kWHW50I0Vza
Second part of today's RCE-@myESMO-@ESOncology Training for #PatientAdvocates brought together physicians, nurses and patients exploring the opportunities and challenges of #telepathology and #telemedicine for #rarecancer patients.
ow.ly/ZNt450HGejM
At today's session, Giancarlo Pruneri from @LaStatale on #telepathology and #telemedicine, and how networking is a solution for #raretumours and #biomarkers
👉ow.ly/ZNt450HGejM
#rarecancer @ESOncology @myESMO
In the last part of today's session, Sergio Sandrucci, Sandrine Marreaud & Federica Castiglione shared their perspectives on the implications of #COVID19 on clinical research & healthcare professionals, & how #rarecancer pts communities can be supported
👉ow.ly/ZNt450HGejM
Next up from today's session, Radu Ianovici presents main recommendations from @cancereu letter on #COVID19 & #cancer. The letter calls on policymakers to ensure pts get diagnosis & tx in a safe manner, & is signed by 320 organisations.
👉ow.ly/ZNt450HGejM
#covid19ncancer
From today's session on #rarecancers in the #covid19 era, @KathyOliverIBTA discusses @theIBTA patient survey on #covid19vaccination & highlights that the continuity and quality of care for #rarecancerpatients should be protected
ow.ly/ZNt450HGejM
Rare Cancers Europe retweeted
Great seeing all participants at today's session with some excellent discussions on topics around the European #rarecancer policy landscape, & looking foward to tomorrow's session on #rarecancers in the new #COVID-19 era.
👉ow.ly/ZNt450HGejM
@ESOncology @myESMO @casali_pg
Great seeing all participants at today's session with some excellent discussions on topics around the European #rarecancer policy landscape, & looking foward to tomorrow's session on #rarecancers in the new #COVID-19 era.
👉ow.ly/ZNt450HGejM
@ESOncology @myESMO @casali_pg
From today's session, Ariane Weinman on rare cancers in the #EUCancerPlan, & new section on #rarecancers in the @EP_BeatCancer report. @BettinaRyll on how rare cancer pts will benefit from Horizon Europe Mission on Cancer, & vital role of #cancerresearch
ow.ly/8BW050HP5ru
Today's session will be exploring the #EUCancerPlan & #EUCancerMission, as well as the Romanian national plan for #cancer, collaboration w/ the #rarecancer national network in Italy, pts involvement in HTA in Sweden & more…
Register ➡️ ow.ly/8BW050HP5ru
@ESOncology @myESMO
Rare Cancers Europe retweeted
Interested in opportunities for #rarecancer patients from digitalisation? Join the RCE-ESMO-ESO Training for #PatientAdvocates session (10 Feb) ‘#Cancercare: ensuring digitalisation benefits rare #cancer patients’.
Registration 👉 ow.ly/ZNt450HGejM
@ESOncology @myESMO
