Dedicated to finding cures for rare cancers. 🔬 We empower patients to donate tumor tissue to research through our platform, https://xitter.cf/t.co/UXGcc69Vea.🎗️ Consent today!
Joined February 2013
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Rare Cancer Research Foundation + Pattern.org retweeted
đź“Ł Mark your calendars for 4/10-4/11 for The EHE Foundation's 2025 EHE 360 Global Patient Conference. More details to follow soon!
#EHE360 #EHE #EHEfoundation #TheEHEfoundation #justlive #rarecancer #EHEcancer #sarcoma #empowerpatients
Rare Cancer Research Foundation + Pattern.org retweeted
We are proud to work with organizations like @RareCancerRF to help our researchers like @PavlosMsaouel make moves for cancer research. Click the link to learn more about Dr. Msaouel’s discovery because of this relationship!
v.org/story/a-collaborative-…
ALT Image of Dr. Msaouel in his lab. Text is in dark blue and white.
Rare Cancer Research Foundation + Pattern.org retweeted
Our friend @KimrynRathmell @NCIDirector shared how a young #RMC patient ignited her #patientadvocacy. And was brought to tears seeing @kaydaustin, who shared her story w the Rathmell lab @VUMCKidney, in the audience. Grateful for the passion of #kidneycancer community! #ASCO24
Rare Cancer Research Foundation + Pattern.org retweeted
Thrilled to meet so many passionate advocates at #ASCO24! Your dedication drives progress and inspires us all. Together, we're making strides in cancer research and patient care.
Thank you for being the voice of hope and change. #CancerAdvocacy @SWOG
ALT Dr. Kimryn Rathmell meets with cancer advocates at ASCO
ALT Dr. Kimryn Rathmell meets with cancer advocates at ASCO
ALT Dr. Kimryn Rathmell meets with cancer advocates at ASCO
Rare Cancer Research Foundation + Pattern.org retweeted
After a couple of delays, officially en route to #ASCO. Excited to see everyone! I’ll be at the @RareCancerRF booth on and off throughout the weekend. Stop by and say hi! 👋 #ASCO24
Rare Cancer Research Foundation + Pattern.org retweeted
Join us for the 14th Annual Great Plains Rare Disease Summit!
Barbara is a consultant to the Cancer Cell Line Factory at the Broad Institute of MIT and Harvard, a member of NORD's Rare Cancer Coalition.
Registration Link: app.smartsheet.com/b/form/02…
Rare Cancer Research Foundation + Pattern.org retweeted
New charity partner Rare Cancer Research Foundation finds cures for rare cancers through accelerated research & promising therapies.
Their Pattern.org improves research & gives personalized data w/ treatment options for patients.
We wish @rarecancerrf much success!
Rare Cancer Research Foundation + Pattern.org retweeted
“I didn’t know how to live my life because I didn’t know how much time I had left.”
Katie Coleman wishes she had support from @rarecancerrf during rare cancer treatment. Read about her journey + the work she's doing to help other patients: bit.ly/3V53tAs
#RareAsOne
Rare Cancer Research Foundation + Pattern.org retweeted
Science is better with patients as partners. @RareCancerRF is making this a reality by helping patients influence the trajectory of rare cancer research nationwide by donating their live tumor tissue at pattern.org/
#RareAsOne
Rare Cancer Research Foundation + Pattern.org retweeted
The @targetcancer Lunch & Learn series returns on 1/25 with Patients as Partners in #RareCancer Research, featuring @targetcancer TRACK, @count_me_in, @RareCancerRF Pattern, and @NCI_CCR_PedOnc MyPART. Register: tinyurl.com/TCFwebinarJan25
Rare Cancer Research Foundation + Pattern.org retweeted
Researchers at Dana-Farber Cancer Institute and Boston Medical Center conducted one of the first-ever analyses of neuroendocrine tumors (NETs) at single-cell resolution, unlocking new insights into this rare and often hard-to-treat cancer.
ms.spr.ly/60149mDQK
ALT DFCI Building Photos
Rare Cancer Research Foundation + Pattern.org retweeted
Today is #RareCancerDay, a day to raise awareness for the millions of Americans with a rare #cancer diagnosis. That includes all children with cancer.
Share your own stories and resources with the hashtag and learn more about #RareCancerDay here: bit.ly/3EHaY7o
ALT Yellow background with text reading, "One in ten people in the U.S. have a rare disease. Together, that's over 30 million of our loved ones friends, colleagues, and neighbors." Rare Cancer Coalition and NORD tagline on bottom.
ALT Text reads, "Like other rare diseases, rare cancers can be extremely challenging to diagnose, resulting in numerous physician visits, misdiagnosis, and substantial delays in diagnosis that can devastate families emotionally and physically."
ALT Because patient numbers battling a specific rare disease or rare cancer are so small, expertise, research and development funding are lacking, yet desperately needed.
Rare Cancer Research Foundation + Pattern.org retweeted
Help raise awareness for people living with rare cancers on #RareCancerDay this Saturday, September 30!
Learn all about rare #cancer and how you can get involved: bit.ly/3qRYfrp
ALT Fact: More than 1 in 4 cancer diagnoses in the U.S. are rare.
Rare Cancer Research Foundation + Pattern.org retweeted
🎯September is #ProstateCancerAwarenessMonth! Prostate NET is rare and accounts for less than 2% of all prostate cancers. It is more likely to be NEC than NET. #Urologists must be aware:
✅Download a #NETInfo in your language: incalliance.org/net-info-pac… #LetsTalkAboutNETs #Prostate
Rare Cancer Research Foundation + Pattern.org retweeted
Did you know over 1 in 4 #cancer diagnoses in the U.S. are rare?
#RareCancerDay is coming up on Saturday, September 30!
Learn all about #RareCancer and get involved in this year's activities here: bit.ly/3EHaY7o
ALT Purple background with text reading "Over 1 in 4 cancer diagnosis in the U.S. are rare" with image of clipboard and NORD Rare Cancer Coalition logo.
Rare Cancer Research Foundation + Pattern.org retweeted
Ahead of #RareCancerDay, join NORD on Wednesday, September 27 for a free webinar all about living with, treating, and researching various forms of #RareCancer. This webinar is intended for both patients and the medical community. Register here today: bit.ly/3PoZZEn
ALT Information about rare cancer webinar, "Barriers, Breakthroughs, and Progress in Rare Cancer" on September 27 at 2:00pm ET.
Rare Cancer Research Foundation + Pattern.org retweeted
@CureSarcoma is holding a free webinar on clinical trials for #sarcoma patients. 6 pm EDT Sept. 27. Register here: us06web.zoom.us/webinar/regi…
Rare Cancer Research Foundation + Pattern.org retweeted
A few years ago, I never could have imagined having a week like this. Cancer changed my life in so many ways, but this week really highlighted some of the best ways.
This week was a bit of a milestone week for me as I started a new job at the @RareCancerRF, found myself on the cover of CURE magazine, signed with a literary agent for my memoir that I’m giving my proceeds to research from, recorded a new podcast episode for our series on radiation for Oncology Unscripted and got to top off the weekend by celebrating other exciting news for something I’ve been working on that I can’t wait to share soon.
Coming up on 3 years ago I was diagnosed with an extremely rare, stage IV kidney cancer at 29. I had 15+ tumors, one larger than a softball and a rough prognosis due to the limited information and treatments for my cancer. I thought my life was over.
I wish I could go back and tell that terrified young woman leaving the ER with tears streaming down her face that nearly 3 years later she’d have no active cancer and would still be here for one of the coolest weeks of her life.
I feel so insanely lucky to be here and catch myself saying at least once a week, “Life is wild, I can’t believe I get to be here for this.”
Cherish every moment, celebrate every milestone, and most importantly never give up.
Rare Cancer Research Foundation + Pattern.org retweeted
For over 50 years, #JimmyBuffett uplifted and brought smiles to millions of people with his iconic music. We send condolences to his family and would like to share resources about #MerkelCellCarcinoma, a rare type of #SkinCancer. cancer.gov/types/skin/patien… #RareDisease
The skin cancer that caused Jimmy Buffett's death is 40 times rarer than melanoma. Here's what to know. cbsn.ws/3qZ7l9D
Rare Cancer Research Foundation + Pattern.org retweeted
#RareCancerDay is next month on September 30. Did you know 27% of #cancer diagnoses are rare?
If you or a loved one have been affected by a #RareCancer, share your story with NORD for the chance to be one of our featured community stories next month: bit.ly/3zTnxdf
ALT Blue and purple background of images of community members stitched together with text reading, "Share Your Story With NORD! Join the individuals and families who have contributed their personal account of living with rare diseases." with NORD 40th Anniversary logo.