? You're invited to a virtual Open House on Thursday, April 17th at 1 or 6 PM ET. Come meet our team, learn more about our impact, and hear what's on the horizon for the Foundation. We'll also be sharing about different ways you can get involved with us.? ? To attend an Open House, select the time that is ideal for your schedule and RSVP through the links below. We look forward to seeing you there! ?? April 17 @ 1 PM ET: https://lnkd.in/eag3ZFi6 ?? April 17 @ 6 PM ET: https://lnkd.in/extbuiy4 #DTRF #DesmoidTumorResearchFoundation #desmoid #desmoidtumor
The Desmoid Tumor Research Foundation (DTRF)
资金募集机构
Our mission is to aggressively fund research, and ultimately to find a cure for desmoid tumors.
关于我们
The Desmoid Tumor Research Foundation (DTRF) is a nonprofit organization responsible for sparking the desmoid tumor research movement that has now grown into a thriving global effort to find a cure for this rare disease. Since its founding in 2005, the DTRF’s primary focus on funding desmoid tumor research has since catalyzed clinical trials, cultivated connections between scientific collaborators, bettered pharma-patient relationships and furthered patient advocacy and education efforts. As the DTRF supports the medical community, it provides patients with tools and the spotlight they need to give them hope for the future. Co-founded by a desmoid tumor patient and a care partner, the DTRF’s culture is rooted in the patient-first perspective and pervades all operations. As the organization grows in its research leadership and collaboration efforts, it increases its acceleration toward finding a cure. The DTRF team will stop at nothing to find more treatments and ultimately, a cure for desmoid tumors. As it persists in its mission, the DTRF is committed to continue to fund research, advocate for patients and families and spread awareness to cultivate an empowered global community anchored in empathy and powered by purpose.
- 网站
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https://www.dtrf.org
The Desmoid Tumor Research Foundation (DTRF)的外部链接
- 所属行业
- 资金募集机构
- 规模
- 2-10 人
- 总部
- Philadelphia
- 类型
- éžè¥åˆ©æœºæž„
- 创立
- 2005
- 领域
- Fundraisingã€Research grantsã€Desmoid Tumorså’ŒRare Disease
地点
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主è¦
获å–路线
us，Philadelphia
The Desmoid Tumor Research Foundation (DTRF)员工
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? CALL TO ACTION: Make a difference by calling your members of Congress today. We need your help to protect critical funding for desmoid tumor research. ?? Recently, the National Institutes of Health (NIH) announced a major change: they plan to reduce the rate for “indirect costs†to 15% for all new and existing NIH contract awards. Indirect costs are essential to supporting the infrastructure that enables scientific research. Proposed cuts threaten a pipeline of innovation needed to further advancements in patient care. ?? Learn more and follow a few simple steps to advocate for desmoid tumor research in Congress today. Read our blog post with all the details: https://lnkd.in/eMdkNP3Z ?? You can also download the 5 Calls app to make this call-to-action even easier. Follow the steps on the app to connect with your members of Congress: https://lnkd.in/e6vHXiyx ?? Every single call counts. We've talked to many desmoid tumor patients who call weekly! Thank you for your constant advocacy for desmoid tumor research. Please share this message with your networks to help us ensure that desmoid tumor research continues to receive the support it needs. #desmoidtumorawareness #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #FAP #OrphanDisease #raredisease
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??? Last chance to join us TODAY, March 24th at 6 PM ET for “Ask the Radiologist†with a leading radiologist, Dr. Robert Lefkowitz, from Memorial Sloan Kettering. This conversation will be an *unrecorded* Zoom meeting (not a webinar) in a Q&A format. ?? Register and submit your questions here: https://bit.ly/4blD6ML ?? The DTRF is excited to try new and different ways of sharing knowledge with the desmoid patient community. Follow these simple instructions prior to the event: 1?? Before attending this Q&A, please watch Dr. Lefkowitz’s 2023 Patient Meeting presentation, “Imaging of Desmoid Tumors,†by clicking this link: https://lnkd.in/eDCQYaqj. 2?? After watching the video, submit your questions when you register for this Q&A event. Dr. Lefkowitz will answer your questions about all things radiology, from imaging modalities to scans. Thank you to our virtual event sponsor, SpringWorks Therapeutics, for supporting this special event. #desmoidtumorawareness #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #FAP #OrphanDisease #raredisease
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?? Clinical Trial Recruitment: "FOG-001 in Locally Advanced or Metastatic Solid Tumors. The goal of this clinical trial is to determine if FOG-001 is safe and effective in participants with locally advanced or metastatic solid tumors." This trial is currently recruiting patients in Arizona, Connecticut, Massachusetts, Missouri, New York, Oregon, Tennessee and Texas. Check back to see if additional locations are added soon. If you have questions, please contact the study contact listed in the link below. Explore the trial details and participation criteria: https://lnkd.in/eYVWHraJ. #Desmoid #clinicaltrial #DesmoidTumors #DesmoidTumor #aggressivefibromatosis #DTRF #DesmoidTumorResearchFoundation #Desmoidian #desmoidresearch
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Watch "Decoding Desmoid Tumors" on Progress, Potential, and Possibilities with Dr. Alessandra Maleddu, MD, Medical Oncologist and DTRF Medical Advisory Board Member. Dr. Maleddu specializes in the care of patients with soft tissue and bone sarcomas at the University of Colorado Cancer Center #desmoidtumorawareness #DTRF #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #FAP #OrphanDisease #raredisease
Decoding Desmoid Tumors - Dr. Alessandra Maleddu, MD - University of Colorado Cancer Center joins me on Progress, Potential, And Possibilities #AlessandraMaleddu #MedicalOncologist #UniversityOfColorado #Sarcoma #DesmoidTumors #SpringWorksTherapeutics #JenniferFisherJewelry #Oncology #Cancer #ProgressPotentialAndPossibilities #IraPastor #Podcast #Podcaster #STEM #Innovation #Science #Technology #Research (FULL EPISODE LINK - https://lnkd.in/gEnehZwG)
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?? Unlike most of our online events, this special event will not be recorded, so join us live! ?Check out some of the questions we'll cover at "Ask the Radiologist" on Monday, March 24th at 6 PM ET with Dr. Robert Lefkowitz from Memorial Sloan Kettering Cancer Center: Will I need to stop breastfeeding if I have to get an MRI with contrast? Can I get an MRI during pregnancy? What are the relative differences/advantages of CT v MRI? Can I follow my tumor using a CT scan rather than MRI? How are desmoid tumors measured? How can my doctor tell if my desmoid is dying? What does "stable" mean? ?? Register and submit your questions here: https://bit.ly/4blD6ML Thank you to our virtual event sponsor, SpringWorks Therapeutics, for supporting this special event. #desmoidtumorawareness #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #FAP #OrphanDisease #raredisease
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Take a moment to read the newly published article, "Nirogacestat—the pathway to approval of the first treatment for desmoid tumors, a rare disease," which chronicles the clinical development journey of nirogacestat from 2009 to November 2023. ?? Read the full article: https://lnkd.in/edMCNntb ? For roughly fifteen years, the DTRF advocated for this groundbreaking treatment in close collaboration with patients, clinical advisors and key stakeholders, including SpringWorks Therapeutics . DTRF offers a heartfelt thank you to all stakeholders who contributed to this important milestone. #desmoidtumorawareness #DTRF #DesmoidTumorResearchFoundation #Desmoidian #DesmoidTumors #desmoidtumor #desmoidresearch #aggressivefibromatosis #FAP #OrphanDisease #raredisease
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??? Looking to hear directly from medical experts on a variety of desmoid tumor topics? Browse the DTRF Video Library today! Filter, search, and watch past virtual events and presentations on a variety of desmoid tumor-related topics. ? The DTRF proudly produces quality video resources to educate our community. Help support our work with a donation at https://lnkd.in/e3Ux5ZRG. ?? In honor of our 20th Anniversary, anyone who donates $120 or more will receive a DTRF awareness t-shirt! Shirt size can be requested at the donation checkout and will be mailed to the address provided with your donation. #DTRF20Years #DTRF #DesmoidTumorResearchFoundation #desmoid #desmoidtumor #desmoidawareness #aggressivefibromatosis #Desmoidian #desmoidresearch #FAP #familialadenomatouspolyposis #OrphanDisease #raredisease #sarcoma #sarcomaawareness #oncology #hope
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When surgeries are appropriate, fresh desmoid tissue samples can be collected for research. Your fresh desmoid tumor tissue sample could hold the key to unlocking new discoveries about what drives desmoid tumors. With your prior online consent through Pattern.org, a small amount of excess tissue from your surgery will be collected and sent to a key research partner such as the Boehm Lab at the Koch Institute of MIT. ?? Learn more on our website: https://lnkd.in/gbWu7fkf #desmoidtumorresearch #research #DTRF #DesmoidTumorResearchFoundation #desmoid #desmoidtumor #desmoidawareness #aggressivefibromatosis #Desmoidian #desmoidresearch #FAP #familialadenomatouspolyposis #OrphanDisease #raredisease #sarcoma #sarcomaresearch #sarcomaawareness #oncology #hope #tissuedonation
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? The DTRF is excited to welcome Jason Ortwerth to its Board of Directors. Jason was diagnosed with a desmoid tumor in 2017 and is currently serving as Division Vice President at Automatic Data Processing (ADP), a global human capital management company. The DTRF is grateful for our board's commitment and depth of professional expertise. Their steadfast support is instrumental in fundraising, community-building, and guiding priorities in both programming and research. Learn more about Jason and the entire Board by clicking here: https://lnkd.in/gJDQ6wYf
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