NEW WEBINAR DATE! Join us for “Introducing the New LRG Patient Registry” to discover how its redesigned features are improving the patient experience and advancing #GISTresearch and care. Register: bit.ly/PRWebinar2026 #GIST #PatientRegistry #RareCancer
November 11, 2026 at 7:43 PM
NEW WEBINAR DATE! Join us for “Introducing the New LRG Patient Registry” to discover how its redesigned features are improving the patient experience and advancing #GISTresearch and care. Register: bit.ly/PRWebinar2026 #GIST #PatientRegistry #RareCancer
www.medrxiv.org/content/10.6...
Thrilled to be part of the group that launched a #milestone publication in the field #Ewingsarcoma. Spatial niche organization is a relevant layer in EwS #heterogeneity and clinical outcome. #sarcoma #rarecancer #ayacancer #childhoodcancer
@moritzgerstung.bsky.social
Thrilled to be part of the group that launched a #milestone publication in the field #Ewingsarcoma. Spatial niche organization is a relevant layer in EwS #heterogeneity and clinical outcome. #sarcoma #rarecancer #ayacancer #childhoodcancer
@moritzgerstung.bsky.social
October 30, 2026 at 2:13 PM
www.medrxiv.org/content/10.6...
Thrilled to be part of the group that launched a #milestone publication in the field #Ewingsarcoma. Spatial niche organization is a relevant layer in EwS #heterogeneity and clinical outcome. #sarcoma #rarecancer #ayacancer #childhoodcancer
@moritzgerstung.bsky.social
Thrilled to be part of the group that launched a #milestone publication in the field #Ewingsarcoma. Spatial niche organization is a relevant layer in EwS #heterogeneity and clinical outcome. #sarcoma #rarecancer #ayacancer #childhoodcancer
@moritzgerstung.bsky.social
Explore our upcoming webinars on using AI in your healthcare journey and Understanding metabolic changes in SDH-deficient GIST! AI Webinar: bit.ly/Using-AI-Web... SDH Webinar: bit.ly/Understandin... #GIST #RareCancer #GISTEducation #AIinhealthcare #SDH
October 29, 2026 at 2:04 PM
Explore our upcoming webinars on using AI in your healthcare journey and Understanding metabolic changes in SDH-deficient GIST! AI Webinar: bit.ly/Using-AI-Web... SDH Webinar: bit.ly/Understandin... #GIST #RareCancer #GISTEducation #AIinhealthcare #SDH
How many loved ones have you lost to cancer so far?
There's 1 cancer death every 5 seconds.
Here's Cancer Statistics from medical, cancer & government sites.
#cancer #death #cancerstatistics #cancercases #cancerdeaths #cancerkills #deaths #cancerrates #rarecancer #medicalfacts #medical #nurses
There's 1 cancer death every 5 seconds.
Here's Cancer Statistics from medical, cancer & government sites.
#cancer #death #cancerstatistics #cancercases #cancerdeaths #cancerkills #deaths #cancerrates #rarecancer #medicalfacts #medical #nurses
October 27, 2026 at 7:26 PM
How many loved ones have you lost to cancer so far?
There's 1 cancer death every 5 seconds.
Here's Cancer Statistics from medical, cancer & government sites.
#cancer #death #cancerstatistics #cancercases #cancerdeaths #cancerkills #deaths #cancerrates #rarecancer #medicalfacts #medical #nurses
There's 1 cancer death every 5 seconds.
Here's Cancer Statistics from medical, cancer & government sites.
#cancer #death #cancerstatistics #cancercases #cancerdeaths #cancerkills #deaths #cancerrates #rarecancer #medicalfacts #medical #nurses
❤️
Elizabeth is battling Stage 3 Primary Peritoneal Serous Psammocarcinoma. Her husband, Charles, misses work to care for her as bills pile up.
Please donate today to help them through this fight. Every dollar counts! Can’t donate? Please share. ❤️
#cancerSupport #RareCancer
gofund.me/cc6c45778
Elizabeth is battling Stage 3 Primary Peritoneal Serous Psammocarcinoma. Her husband, Charles, misses work to care for her as bills pile up.
Please donate today to help them through this fight. Every dollar counts! Can’t donate? Please share. ❤️
#cancerSupport #RareCancer
gofund.me/cc6c45778
Donate to Standing with Elizabeth Through Cancer Care, organized by Charles Willoughby
Elizabeth is living with a disability, which was already a daily hurdl… Charles Willoughby needs your support for Standing with Elizabeth Through Cancer Care
gofund.me
October 26, 2026 at 7:34 PM
❤️
Elizabeth is battling Stage 3 Primary Peritoneal Serous Psammocarcinoma. Her husband, Charles, misses work to care for her as bills pile up.
Please donate today to help them through this fight. Every dollar counts! Can’t donate? Please share. ❤️
#cancerSupport #RareCancer
gofund.me/cc6c45778
Elizabeth is battling Stage 3 Primary Peritoneal Serous Psammocarcinoma. Her husband, Charles, misses work to care for her as bills pile up.
Please donate today to help them through this fight. Every dollar counts! Can’t donate? Please share. ❤️
#cancerSupport #RareCancer
gofund.me/cc6c45778
We’re starting in ONE HOUR! Join us for our NF1-associated GIST webinar with expert insights and a patient perspective. Register now: bit.ly/NF1-GIST #NF1 #GIST #NF1GIST #RareCancer #GISTResearch
We’re starting in ONE HOUR! Join us for our NF1-associated GIST webinar with expert insights and a patient perspective. Register now: bit.ly/NF1-GIST #NF1 #GIST #NF1GIST #RareCancer #GISTResearch
News update via NF Bot
bsky.app
October 15, 2026 at 10:40 AM
We’re starting in ONE HOUR! Join us for our NF1-associated GIST webinar with expert insights and a patient perspective. Register now: bit.ly/NF1-GIST #NF1 #GIST #NF1GIST #RareCancer #GISTResearch
Tomorrow! Join us for a patient-centered discussion on NF1-associated GIST, current research, treatment considerations, and lived experience. Register: bit.ly/NF1-GIST
#NF1 #GIST #NF1GIST #RareCancer #GISTResearch
#NF1 #GIST #NF1GIST #RareCancer #GISTResearch
Tomorrow! Join us for a patient-centered discussion on NF1-associated GIST, current research, treatment considerations, and lived experience. Register: bit.ly/NF1-GIST
#NF1 #GIST #NF1GIST #RareCancer #GISTResearch
News update via NF Bot
bsky.app
October 14, 2026 at 10:43 AM
Tomorrow! Join us for a patient-centered discussion on NF1-associated GIST, current research, treatment considerations, and lived experience. Register: bit.ly/NF1-GIST
#NF1 #GIST #NF1GIST #RareCancer #GISTResearch
#NF1 #GIST #NF1GIST #RareCancer #GISTResearch
We’re starting in ONE HOUR! Join us for our NF1-associated GIST webinar with expert insights and a patient perspective. Register now: bit.ly/NF1-GIST #NF1 #GIST #NF1GIST #RareCancer #GISTResearch
October 14, 2026 at 3:03 PM
We’re starting in ONE HOUR! Join us for our NF1-associated GIST webinar with expert insights and a patient perspective. Register now: bit.ly/NF1-GIST #NF1 #GIST #NF1GIST #RareCancer #GISTResearch
Tomorrow! Join us for a patient-centered discussion on NF1-associated GIST, current research, treatment considerations, and lived experience. Register: bit.ly/NF1-GIST
#NF1 #GIST #NF1GIST #RareCancer #GISTResearch
#NF1 #GIST #NF1GIST #RareCancer #GISTResearch
October 13, 2026 at 6:33 PM
Tomorrow! Join us for a patient-centered discussion on NF1-associated GIST, current research, treatment considerations, and lived experience. Register: bit.ly/NF1-GIST
#NF1 #GIST #NF1GIST #RareCancer #GISTResearch
#NF1 #GIST #NF1GIST #RareCancer #GISTResearch
#pharma #pharmaceuticals #NICE #desmoidtumours #NICEApproval #patientaccess #Merck #NICEfinaldraftguidance #Ogsiveo #England #NHS #CancerDrugsFund #nirogacestat #targeteddrugtreatment #rarecancer #softtissuetumours #DesmoidAidUK #DeFitrial #RareTumours #innovativemedicines
zurl.co/iM0Ds
zurl.co/iM0Ds
NICE backs first systemic therapy for desmoid tumours - PharmaTimes
Approval gives patients access to new targeted option
pharmatimes.com
October 5, 2026 at 10:10 AM
Rare cancers make up 25% to 30% of U.S. cancer diagnoses, but tools are built for common tumors. A new open-source AI pipeline matched 30% of tested sarcoma patients to a drug option for about $1.17 each.
www.cureus.com/articles/489...
#PrecisionOncology #RareCancer #Cureus
www.cureus.com/articles/489...
#PrecisionOncology #RareCancer #Cureus
October 5, 2026 at 3:25 PM
Rare cancers make up 25% to 30% of U.S. cancer diagnoses, but tools are built for common tumors. A new open-source AI pipeline matched 30% of tested sarcoma patients to a drug option for about $1.17 each.
www.cureus.com/articles/489...
#PrecisionOncology #RareCancer #Cureus
www.cureus.com/articles/489...
#PrecisionOncology #RareCancer #Cureus
Congratulations to ARCP authors AProf Bryan Chan, @ProfClareScott, and Dr Cassie Turner on their publication exploring 42 years of data on sinonasal undifferentiated carcinoma (SNUC) in Queensland.
🔗 doi.org/10.1016/j.es...
#RareCancer #CancerResearch
🔗 doi.org/10.1016/j.es...
#RareCancer #CancerResearch
September 24, 2026 at 12:13 AM
Congratulations to ARCP authors AProf Bryan Chan, @ProfClareScott, and Dr Cassie Turner on their publication exploring 42 years of data on sinonasal undifferentiated carcinoma (SNUC) in Queensland.
🔗 doi.org/10.1016/j.es...
#RareCancer #CancerResearch
🔗 doi.org/10.1016/j.es...
#RareCancer #CancerResearch
On #RareCancerDay, we’re raising awareness of pheochromocytoma and paraganglioma (PPGL). 💚
Share this post to help make rare cancers like PPGL more visible.
#PheoParaAlliance #PPGL #RareCancer
Share this post to help make rare cancers like PPGL more visible.
#PheoParaAlliance #PPGL #RareCancer
September 23, 2026 at 11:02 AM
On #RareCancerDay, we’re raising awareness of pheochromocytoma and paraganglioma (PPGL). 💚
Share this post to help make rare cancers like PPGL more visible.
#PheoParaAlliance #PPGL #RareCancer
Share this post to help make rare cancers like PPGL more visible.
#PheoParaAlliance #PPGL #RareCancer
This #RareCancerDay, NORD is sharing findings from a survey of oncologists we conducted with @medliveofficial.bsky.social.
What we found: 1 in 2 oncologists don't feel confident recognizing a rare #cancer.
Read our full findings: bit.ly/4cXKhgn
#RareCancer #oncology
What we found: 1 in 2 oncologists don't feel confident recognizing a rare #cancer.
Read our full findings: bit.ly/4cXKhgn
#RareCancer #oncology
September 23, 2026 at 3:41 PM
This #RareCancerDay, NORD is sharing findings from a survey of oncologists we conducted with @medliveofficial.bsky.social.
What we found: 1 in 2 oncologists don't feel confident recognizing a rare #cancer.
Read our full findings: bit.ly/4cXKhgn
#RareCancer #oncology
What we found: 1 in 2 oncologists don't feel confident recognizing a rare #cancer.
Read our full findings: bit.ly/4cXKhgn
#RareCancer #oncology
On #RareCancerDay, we stand with everyone affected by rare cancers and the PPGL community working toward better answers, knowledgeable care, stronger support, and greater awareness.
Together, we can make rare more visible.
#PheoParaAlliance #PPGL #RareCancer #Pheochromocytoma #Paraganglioma
Together, we can make rare more visible.
#PheoParaAlliance #PPGL #RareCancer #Pheochromocytoma #Paraganglioma
September 23, 2026 at 7:26 AM
On #RareCancerDay, we stand with everyone affected by rare cancers and the PPGL community working toward better answers, knowledgeable care, stronger support, and greater awareness.
Together, we can make rare more visible.
#PheoParaAlliance #PPGL #RareCancer #Pheochromocytoma #Paraganglioma
Together, we can make rare more visible.
#PheoParaAlliance #PPGL #RareCancer #Pheochromocytoma #Paraganglioma
The STC-15 (a METTL3 inhibitor) Phase 2 monotherapy trial is currently recruiting for #DDLPS patients. Learn more: clinicaltrials.gov/study/NCT069... #Liposarcoma #Sarcoma #RareCancer #METTL3Sinhibitor
September 11, 2026 at 2:46 PM
The STC-15 (a METTL3 inhibitor) Phase 2 monotherapy trial is currently recruiting for #DDLPS patients. Learn more: clinicaltrials.gov/study/NCT069... #Liposarcoma #Sarcoma #RareCancer #METTL3Sinhibitor
Learn more about tumor-induced #hypoglycemia and what to look for. More information at: upliftstudy.com #Liposarcoma #Sarcoma #RareCancer
August 28, 2026 at 2:31 PM
Learn more about tumor-induced #hypoglycemia and what to look for. More information at: upliftstudy.com #Liposarcoma #Sarcoma #RareCancer
14 rounds of radiation, 11 more to go. Small chance it will work to shrink the tumor to be removed. I'm hanging on to hope through a rough day.
#rarecancer #liversarcoma
#rarecancer #liversarcoma
September 21, 2025 at 8:46 PM
14 rounds of radiation, 11 more to go. Small chance it will work to shrink the tumor to be removed. I'm hanging on to hope through a rough day.
#rarecancer #liversarcoma
#rarecancer #liversarcoma
Just putting this out there in the hope it’ll spread a little awareness and knowledge. Before I was diagnosed with #EpithelioidHemangioendothelioma, I hadn’t heard of it and it’s easy to feel unseen and alone when you have such a rare, incurable disease.
#RareCancer #Sarcoma #Cancer #EHEAwareness
#RareCancer #Sarcoma #Cancer #EHEAwareness
July 4, 2026 at 6:33 PM
Just putting this out there in the hope it’ll spread a little awareness and knowledge. Before I was diagnosed with #EpithelioidHemangioendothelioma, I hadn’t heard of it and it’s easy to feel unseen and alone when you have such a rare, incurable disease.
#RareCancer #Sarcoma #Cancer #EHEAwareness
#RareCancer #Sarcoma #Cancer #EHEAwareness
Never wanted to have to walk into one of these again! Saw surgeon: definitely stage 4 #EHE, definitely all over my lungs, definitely a pain in the neck. She’s seen 3 cases in her entire career.
Need more scans to up the excitement!
Sigh.
#CancerSucks #RareCancer #EHEawareness #sarcoma #fightEHE
Need more scans to up the excitement!
Sigh.
#CancerSucks #RareCancer #EHEawareness #sarcoma #fightEHE
July 1, 2026 at 3:37 AM
Never wanted to have to walk into one of these again! Saw surgeon: definitely stage 4 #EHE, definitely all over my lungs, definitely a pain in the neck. She’s seen 3 cases in her entire career.
Need more scans to up the excitement!
Sigh.
#CancerSucks #RareCancer #EHEawareness #sarcoma #fightEHE
Need more scans to up the excitement!
Sigh.
#CancerSucks #RareCancer #EHEawareness #sarcoma #fightEHE
Guess which rare #BreastCancer survivor went and got an even rarer, unrelated #cancer?
Rare cancers are not Pokémon, people. We should not be catching ‘em all.
#EpithelioidHemangioendthelioma
#EHEAwareness #EHE #sarcoma #rarecancers #rarecancer #MyBodyIsTryingToMurderMeAGAIN #WTF
Rare cancers are not Pokémon, people. We should not be catching ‘em all.
#EpithelioidHemangioendthelioma
#EHEAwareness #EHE #sarcoma #rarecancers #rarecancer #MyBodyIsTryingToMurderMeAGAIN #WTF
June 21, 2026 at 12:22 AM
Guess which rare #BreastCancer survivor went and got an even rarer, unrelated #cancer?
Rare cancers are not Pokémon, people. We should not be catching ‘em all.
#EpithelioidHemangioendthelioma
#EHEAwareness #EHE #sarcoma #rarecancers #rarecancer #MyBodyIsTryingToMurderMeAGAIN #WTF
Rare cancers are not Pokémon, people. We should not be catching ‘em all.
#EpithelioidHemangioendthelioma
#EHEAwareness #EHE #sarcoma #rarecancers #rarecancer #MyBodyIsTryingToMurderMeAGAIN #WTF
Sharing for my friend, Michelle. Consider donating if able or else Sharing: #cancer #cancersupport #SFT #rarecancer #healthcare #cancersucks #cancerresearch tinyurl.com/bdkrsvpm
spotfund
tinyurl.com
April 5, 2025 at 6:45 PM
Sharing for my friend, Michelle. Consider donating if able or else Sharing: #cancer #cancersupport #SFT #rarecancer #healthcare #cancersucks #cancerresearch tinyurl.com/bdkrsvpm
Sharing this for my friend, Michelle. #cancersucks #cancersupport #rarecancer #cancer spot.fund/ch83ljsc
Click here to support Michelle Carter's story *FightingStage4RareCancer
*spotfund is the easiest place to create beautiful and free online fundraisers. It takes just minutes to start raising money today.
spot.fund
February 14, 2025 at 11:08 PM
Sharing this for my friend, Michelle. #cancersucks #cancersupport #rarecancer #cancer spot.fund/ch83ljsc
Thanks to 1,000+ people who shared their experiences, the 2025 National Sarcoma Survey is now live.
We’re using the data to drive change.
📖 sarcoma.org.uk/NSS25
#SarcomaUK #NSS25 #RareCancer
We’re using the data to drive change.
📖 sarcoma.org.uk/NSS25
#SarcomaUK #NSS25 #RareCancer
October 13, 2025 at 12:24 PM
Thanks to 1,000+ people who shared their experiences, the 2025 National Sarcoma Survey is now live.
We’re using the data to drive change.
📖 sarcoma.org.uk/NSS25
#SarcomaUK #NSS25 #RareCancer
We’re using the data to drive change.
📖 sarcoma.org.uk/NSS25
#SarcomaUK #NSS25 #RareCancer