TRACER-Transformative Rare Cancer Initiative

To mark Rare Disease Day, we highlight how every oncologist can play a role in transforming rare cancer care. Thanks to the Oncology News Central for featuring this topic. https://lnkd.in/dfAbZwTE

Excited to share that a new version of the CURE ID platform (4.5.3) has been released on web and mobile! As we celebrate the start of 2025, come check out the new features and enhanced look and feel of the treatment registry. Go to https://cure.ncats.io or download “CURE ID”. We have striven to make the site easier to navigate and to provide users more info about the value the data in CURE ID has to help find treatments. See why it is so important for patients, caregivers/partners, and healthcare providers to share their treatment experiences. You can now share treatments with off-label drugs for any disease on CURE ID using the Other Diseases form or our new generic cancer & genetic disease forms. A generic form for Infection-Associated Conditions besides Long COVID is in development (e.g., ME, Dysautonomia, etc.) Those interested in reporting their treatment experiences for #LongCovid, #Sarcoma, #RASopathies, and #InfectiousDiseases, or who wish to update their previously entered cases, are continued to be encouraged to do so. The more experiences shared, the more valuable the data. Improvement is a continuous process and we know there is more work to be done. However, we hope we have been able to incorporate insights from a number of users to bring our visitors an improved experience and to have CURE ID bring value to the patient and medical community! Please continue to help us spread the word about CURE ID so it can be an effective resource for patients, caregivers/partners and clinicians alike!

Join us for our first "Brave Conversations" virtual event featuring guest Dr. Taran G., from Fred Hutch and head of TRACER-Transformative Rare Cancer Initiative. We believe this event will foster hope and community to further rare cancer research!?????? RSVP to attend on March 19 at 10 AM CT here: https://lnkd.in/gPvme-ri

Huge applause to the Australian government for investing $4.2M to expand the Australian Rare Cancer (ARC) Portal. This initiative is making it easier for patients—especially in remote areas—to connect with experts, get molecular testing insights, and access clinical trials. Would love to see more efforts like this worldwide! https://lnkd.in/dS2Dywg2

As Cholangiocarcinoma Awareness Month comes to a close, we want to express our heartfelt gratitude for the incredible support and dedication shown by our community. ?? Together, we've illuminated landmarks, shared powerful stories, and spread awareness across the globe about #cholangiocarcinoma. We aim to ensure that the momentum we've built this month continues throughout the year. The strength of our collective efforts as a community provides hope by advancing research to improve treatments and, ultimately, find a cure.?? Each effort to raise awareness brings us closer to a world free of cholangiocarcinoma. Thank you to our Premier Sponsors, AstraZeneca, Taiho Oncology, and Jazz Pharmaceuticals, for supporting Cholangiocarcinoma Awareness Month. #CCAhope #cureCCA

Rare cancer researchers at TRACER symposium set sights on treatments stalled by red tape TargetCancer Foundation Kalyan Banda Jim Palma https://lnkd.in/dKk2mPGJ

Hey #Washington residents! Your state legislature is considering a bill THIS WEEK to establish a #RareDisease Advisory Council! Help get this #RDAC established by taking action (1 min) here: https://lnkd.in/eNJBg6ZH #WAgov #WApol #WAleg #WAnews

Our Rare Tumor Clinics, hosted in collaboration with the Pediatric Oncology Branch and advocacy partners, bring pediatric patients and their families together with researchers and physicians to learn more about rare tumors, provide treatment recommendations, and accelerate progress. ?? For some patients, this is an opportunity to meet someone else with the same rare tumor for the very first time. ? Learn more about our rare tumor clinics and how to participate: https://go.nih.gov/Y5ZbIYz National Cancer Institute (NCI), NIH Clinical Center (CC) #CancerResearch #ChildhoodCancer #RareCancer #Innovation #Medicine

A framework for oncologists to lead the fight against rare cancers: This article dives into how oncologists can step up and make a big difference in tackling rare cancers. From new initiatives to better collaboration and patient advocacy, it’s all about finding smarter ways to improve care and outcomes. https://lnkd.in/gnJGiEVZ

The Molecular Characterization Initiative is part of NCI’s Childhood Cancer Data Initiative and is a national collaboration between the childhood cancer community, including the Children’s Oncology Group, advocates, pediatric oncologists, researchers, data scientists, children and adolescent and young adults (AYAs) with cancer, and families. It provides state-of-the-art molecular characterization at the time of diagnosis that helps participants and doctors select the best and most appropriate treatment. Participation in the initiative is voluntary and the costs to participate are covered by the program. Learn more: https://go.nih.gov/HRbI4au #AYASCM #Data4ChildhoodCancer