DFPCUK @DF_PC
Desmoid Fibromatosis Patients & Carers is here to empower & support patients to live beyond their diagnosis. England, United Kingdom Joined November 2019-
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🌟 Giveaway Alert🌟 I know some of you are struggling to find today’s drop, so let’s give one of the items away. - RT - Comment a blue 🔵 or yellow 🟡 emoji I’ll choose one lucky winner at random & send them an AH booster bundle Ends 11am | 08/05/26 | UK only
The perfect accessory this festival season! 🎉 💃🏻
Stay cool this festival season and support Sarcoma UK! 🕺 Celebrity ambassador for Sarcoma UK @Graemepark, has collaborated with Fangirl to support those affected by bone & soft tissue cancer. Fans available at: graemeparkdj.tmstor.es/product/147523
@stmarkshospital new #stoma #book will be a vital read for both #patients and #healthcare professionals, providing stoma patients with detailed information on stoma care and empowering them to independently care for their stoma on a daily basis. bit.ly/3yX8RqA
Check out these #RFAChallengers who hit the 2nd #RFAVirtualChallenge Fundraising Milestone! With only 3.5 weeks to go, WE STILL NEED YOU to become an #RFAChallenger! Whether you raise $100 or $1K, TOGETHER we can advance #desmoid tumor research in 2022! DTRF.org/rfa
💙September is Desmoid Tumour Awareness Month 💙#DesmoidAwarenessMonth #DesmoidTumourAwarenessMonth #DesmoidTumorAwarenessMonth #DesmoidFibromatosis #Desmoid #AggressiveFibromatosis
Meet Katrien, a 20-year-old #DesmoidSurvivor from Washington State. “It took a lot to realize that these tumors aren’t easily treated and I need to prepare myself for a long and hard battle." Help raise #DesmoidAwareness: DTRF.org/awareness #DesmoidTumorAwarenessMonth
September is 💙DESMOID TUMOUR AWARENESS MONTH #DesmoidTumourAwarenessMonth #DesmoidTumorAwarenessMonth #DesmoidTumour #DesmoidFibromatosis #Desmoid #DesmoidTypeFibromatosis #DesmoidTumor
SEPTEMBER IS #DesmoidTumorAwarenessMonth! #Desmoid tumors are rare, invasive, soft tissue tumors affecting 5-6 per every 1M people per year (though frequently misdiagnosed). Visit DTRF.org/awareness to learn how to raise #DesmoidAwareness, see our events schedule, & more!
This is an event not to be missed for #DesmoidFibromatosis patients, carers & professionals! We can’t wait to take part again virtually this year! #DesmoidCommunity Look out soon for our annual RFA fundraiser for the DTRF too! #FundACure #DesmoidWarriors #DesmoidUnitedUK
Together we will…EMPOWER OURSELVES at the Annual DTRF Patient Meeting Webinars on 9/25, the main event of #DTRFWeekend2021! Webinar #1 will include overviews of #desmoid medical therapies, #cryoablation, a new #clinicaltrial, & the int’l #pregnancy study. DTRF.org/weekend
** INTERNATIONAL STUDY: DESMOID TUMOUR AND FERTILITY ** @DesmoidI are looking for women to take part in an international study into #DesmoidTumour’s & fertility. Scientific research starts with us! Find out more including links to take part below. #DesmoidFibromatosis
** INTERNATIONAL STUDY: DESMOID TUMOR AND FERTILITY ** Are you a woman who was diagnosed with desmoid tumor DURING your #Fertile age? If the answer is YES, go to desmoidfoundation.org/.../desmoid-tu… and fill out the questionnaire! Scientific research starts with us! #df #desmoid #desmoide
** INTERNATIONAL STUDY: DESMOID TUMOR AND FERTILITY ** Are you a woman who was diagnosed with desmoid tumor DURING your #Fertile age? If the answer is YES, go to desmoidfoundation.org/.../desmoid-tu… and fill out the questionnaire! Scientific research starts with us! #df #desmoid #desmoide
Register today for the #DTRFWeekend2021 (Sept. 24-26) and the summer-long #RFAVirtualChallenge at DTRF.org/weekend! Together we will… 🧩 CONNECT (9/24) 🧩 ADVANCE RESEARCH (9/24) 🧩 EMPOWER OURSELVES (9/25) 🧩 FUND A CURE (June-Sept & 9/26) #DesmoidTumourAwareness
Register today for the #DTRFWeekend2021 (Sept. 24-26) and the summer-long #RFAVirtualChallenge at DTRF.org/weekend! Together we will… CONNECT (9/24) ADVANCE RESEARCH (9/24) EMPOWER OURSELVES (9/25) FUND A CURE (June-Sept & 9/26)
It’s that time of year again & @MalcolmWhales are embarking on their annual #DorsetWalk21! Please follow, like, share and donate! This is an amazing cause very close to our hearts after they helped fund our #DFPC21 patient conference last year. #Support #Donate #Share
Tents are up for our KSCS walkers, now time for some food and games! Everybody is in good spirits ready for the walk to begin in the morning If you would like to donate to this years walk you can do so at justgiving.com/tmwf #teamTMWF #DorsetWalk21
A really important campaign from @TeenageCancer - improving the provision of specialist psychological support is long overdue.
Right now, many young people are facing cancer without the mental health support they need. And the impact of coronavirus is making the situation even worse. It’s #NotOK. But you can help us change it – email your MP and join our campaign 👇 teenagecancertrust.org/notok
Share your support by wearing red! #Red4Research
Today is #Red4Research Day where we show our support for everyone participating, undertaking and supporting COVID-19 research. Get involved by wearing something red and find out more- orlo.uk/ml8Kb @NHSRDForum @NIHRresearch
This is a common issue for many with chronic/lifelong conditions. It’s great to see something being done to combat those risks.
Nearly half of older people in the UK take five or more medicines, increasing the risk of adverse reactions. With @LandG_UK, we've invested in new software to help doctors prescribe the safest and most effective combinations of drugs. orlo.uk/j9MXg #HealthyAgeing
What perfect timing! We just concluded #DrugRepo21 and now we're marching into #Red4Research! Show your support by wearing something red♥️ and tag us in your photos! Three cheers for #Research, #Innovation and #DrugRepurposing 🙌👏
Today is #Red4Research Day where we show our support for everyone participating, undertaking and supporting COVID-19 research. Get involved by wearing something red and find out more- orlo.uk/ml8Kb @NHSRDForum @NIHRresearch
#ASCO21 presentation " Patient Reported Outcomes in Desmoid type Fibromatosis" Thank you to all who worked on this and congratulations on winning the Conquer Cancer Merit Award 🌟 #DesmoidTypeFibromatosis #DesmoidTumour #DesmoidFibromatosis #DesmoidTumor #BenignIsNotFine
Happy to share our ASCO 2021 presentation " Patient Reported Outcomes in Desmoid type Fibromatosis". Thankful to all patients and my mentor for this great opportunity. Thank you Conquer cancer foundation for considering this for Conquer Cancer Merit Award. ascopubs.org/doi/abs/10.120…
Are you a patient diagnosed with a #DesmoidTumour BEFORE or DURING #pregnancy? If your answer is YES, please consider taking part in this important study. Find out more and register via the @DesmoidI website at desmoidfoundation.org/en #DesmoidFibromatosis #SupportResearch
Desmoid Fibromatosis during pregnancy: clinical study youtu.be/0y0mhSFK06Q via @YouTube @DesmoidI @DTRFoundation @sarcomapatients
The @DesmoidI Desmoid Foundation Italy, in collaboration with the Fondazione IRCCS Istituto Nazionale dei Tumori, has launched a survey to study the correlation between desmoid tumors and pregnancy. Learn more: bit.ly/3gzE5ge #desmoid #aggressivefibromatosis #pregnancy
Desmoid Fibromatosis during pregnancy: clinical study youtu.be/0y0mhSFK06Q via @YouTube @DesmoidI @DTRFoundation @sarcomapatients
Congratulations to all who worked on this study! 🥳 #ASCO21 #DesmoidTumourAwareness #DesmoidFibromatosis #AggressiveFibromatosis #SupportResearch #RareDisease #DesmoidTumor
Congrats to @OncoVik_G & team for receiving a #ASCO21 @ConquerCancerFd Merit Award for their study on patient reported outcomes, comparing quality of life results from 102 #desmoid patients to 102 healthy controls. Read the abstract below. ascopubs.org/doi/abs/10.120…
#desmoid tumors were once again a topic of discussion & award-winning research at #ASCO21. We extend our gratitude to the physicians & scientists around the globe working to find answers. View the ASCO abstracts & presentations on #desmoid tumors at meetings.asco.org/abstracts-pres…
Jon Trent, MD, PhD @JTrentMDPhD
6K Followers 4K Following Associate Director @SylvesterCancer. Director #Sarcoma and #GIST. Telemedicine and in-person clinics are open. Tweets are my own.
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11K Followers 2K Following We're no longer updating this account. Follow us on Facebook, Instagram, LinkedIn, YouTube and Threads to stay informed.
Desmoid Tumor Researc... @DTRFoundation
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Andy Livingston, MD M... @jalivingston_md
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5K Followers 5K Following Father of 3, Husband, Surgical Oncologist, Chair of Surgery, Professor @Foxchasecancer-Skier and Traveller
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18 Followers 120 Following I'm Ria, I owe my life to the NHS and my organ donor 💙💚- Multivisceral transplant- Desmoid tumours- Familial adenomatous polyposis - Colon cancer survivor
Catherine Fulvio @Cfulvio
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EORTC Quality of Life... @EORTC_QLG
1K Followers 898 Following The mission of the @EORTC QLG is to develop measures of PRO in #cancer, incl. #HRQoL, and promote and coordinate studies concerning the #QoL of cancer patients.
Rareminds @RaremindsUK
856 Followers 2K Following Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
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14 Followers 109 Following
Janelle Calhoun @ExDirRIS
227 Followers 2K Following Ex. Dr. Of RIS Lachelle Semanko will set up her account days ahead. This @ will be archived. It has been good to serve our community 🌻
Anthony P Conley @APConley77
2K Followers 1K Following Sarcoma Specialist at MDACC, Research of rare cancers: pleomorphic sarcomas, ASPS, #chordomas, & #chondrosarcomas. Views are mine. #sarcoma
Sosipatros Alexander ... @SABOIKOS_MD
350 Followers 716 Following Academic Medical Oncologist, senior clinical program leader, Immuno-oncology, Boehringer-Ingelheim, adjunct assistant professor, Georgetown University
Pap Corps @Pap_Corps
422 Followers 1K Following Nonprofit since 1952 raising crucial funds for cancer research to benefit Sylvester Comprehensive Cancer Center, UM Miller School of Medicine
Cheeky Startups @CheekyStartups
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Rein in Sarcoma @reininsarcoma
2K Followers 5K Following Rein in Sarcoma is a Minnesota based non-profit organization dedicated to sarcoma patient support, research, and education
Carolyn Black @Carolyn35777545
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British Society of Ge... @Bsg2022
643 Followers 428 Following Annual conference for all things Gerontology in the UK
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London Global Cancer ... @LGCW2026
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SPHMedical @SPHMedical
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Pulse Infoframe @pulseinfoframe
568 Followers 1K Following Accelerating science and research with real world evidence, from real patients, in real time. #realworldevidence #raredisease #cancer
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Debbie Artis @DebbieArtisPT
138 Followers 325 Following Specialist Sarcoma Physiotherapist @leedshospitals @Sarcoma_UK @BCRT Tricia Moate Award 2021/ BSG board member
Athina's Ride @AthinasRide
42 Followers 20 Following Athina's Ride is a virtual cycling event raising funds for the Desmoid Tumour Foundation of Canada.
PEP Talks @PrimePEPtalks
237 Followers 981 Following PEP=Patient Engagement Practices! We amplify the patient voice to deliver a triple win for patients, Pharma, and society. - Prime Patient of @PrimeGlobalBuzz
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755 Followers 303 Following Unidad multidisciplinar experta en el diagnóstico y tratamiento de los tumores óseos y de partes blandas en adultos y niños. CSUR Sarcomas infantiles
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Healthcare Operating ... @healthcareOS
277 Followers 1K Following Operating System for Healthcare Institutions
Vanessa Carter AMR �... @VCarterAMR
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Giulia Buizza @giulia_buizza
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Peter Thurley @pfthurley
3K Followers 5K Following #Desmoid survivor | #ChronicPain | #Disabled #MAiD Supporter | ex-Christian | #Philosophy | #ADHD | https://t.co/vnEkeaVOrW | @pfthurley on all platforms
Marianna Coppola @MariannaCoppo15
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uzair Hussain @Uzairhussain00
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Alessandro Gronchi @alegronchi
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WinetteVanDerGraaf @Winette_vdGraaf
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Sarcoma UK @Sarcoma_UK
11K Followers 2K Following We're no longer updating this account. Follow us on Facebook, Instagram, LinkedIn, YouTube and Threads to stay informed.
Desmoid Tumor Researc... @DTRFoundation
1K Followers 316 Following DTRF is the only 501(c)3 in the U.S. solely dedicated to finding a cure for desmoid tumors, a rare, intermediate (locally aggressive), soft tissue sarcoma.
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Liz Connolly @DrLizConnolly
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31 Followers 217 Following BI Product Manager Biologist - Interested in #rarediseases #nutrition Desmoid Foundation ONLUS #patientadvocate Love books, animals, nature!
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Greg Charville @Greg_Charville
3K Followers 2K Following Surgical pathologist | Director of Bone and Soft Tissue Pathology | Associate Director of GI Pathology | @stanfordpath
Radiography Journal @RadiographyJour
6K Followers 685 Following Published by Elsevier for the Society & College of Radiographers, it is the official journal of the European Federation of Radiographer Societies.
RAD Magazine @RADMagazine
3K Followers 1K Following For 50 years RAD Magazine has been a leading publication for medical imaging, radiotherapy and oncology professionals.
Seth M. Pollack @immunosarc
2K Followers 635 Following Steven T. Rosen Prof Cancer Bio Cncr ImmunoTx Co-lead @NUFeinbergMed @NorthwesternMed Dir. Sarcoma Prgm @LurieCancer #immunotherapy for #sarcoma #cures
The Student Voice Pri... @RDStudentVoice
246 Followers 328 Following Closed for entries! Annual, international essay competition for medical & nursing students focused on rare diseases📝💊🩺 Run by @RareBeacon & @M4RareDiseases
CitaL Macmillan Welfa... @MacmillanLLR
38 Followers 123 Following Supporting individuals & families impacted by #cancer across LLR. We provide specialist benefits advice & support up to tribunal representation. 0300 456 8400.
Care for those who ca... @Afterumbrage
861 Followers 1K Following After Umbrage exists to care for carers,we offer free short breaks for carers at our holiday cottages. Contact via website 💚 Registered Charity 1153922
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
Getting On Board @GettingonBoard
4K Followers 2K Following Ceased operations. Thank you to everyone (staff, associates, volunteers, funders) who helped make our mission a reality.
Australia and New Zea... @anzsarcoma
764 Followers 224 Following The Australia and New Zealand Sarcoma Association is the peak body for the sarcoma community. ANZSA is formerly known as ASG and ASSG.
RareDiseaseFdn @rarediseasefdn
8K Followers 490 Following Changing the lives of patients affected by rare & undiagnosed diseases through social support, advocacy & treatment-focused research. https://t.co/qWTTVoKeyL
Met Office - SW Engla... @metofficeSWEng
16K Followers 210 Following Met Office weather warnings for SW England, with additional information from Met Office advisors and meteorologists. For questions, tweet @metoffice
Prog in the Park 2.0 @prog_2
134 Followers 394 Following You will find regular updates here for all things Prog in the Park 2.0 related.Trends for United States
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