Rare Cancer Research Foundation

11/13/2025

🧬 Today is Cancer Biomarker Awareness Day!

Cancer biomarker testing is transforming cancer care — helping ensure patients receive the most effective treatments based on their tumor’s unique molecular profile. But far too many patients still miss the opportunity to be tested in time. Biomarker testing should happen before treatment decisions are made and again if cancer returns.

Clinicians, advocates, patients, and communities all play a role in raising awareness, educating, and advocating for equitable access to testing.

👉Learn more at:
www.cancerprecisionmedicinecommons.org/resources

11/10/2025

Today is NET Cancer Day, a time to shine a light on neuroendocrine tumors (NETs), a rare and often misunderstood group of cancers. NETs are complex, but research is bringing clarity and new hope. Swipe through to learn more about them! 👉

We are currently accepting tissue and data donations for multiple NET types, which we then connect directly to researchers studying NETs. To learn more and get started, visit pattern.org 💙💚

11/06/2025

In the space, caregivers are the quiet heroes. Advocates, researchers, and comforters all in one. As such, we want to highlight helpful resources this month, ranging from emotional to financial support. We sincerely thank every caregiver for all that you do. ❤️

11/05/2025

Register today for this important webinar! 👇

Being a caregiver for someone with leptomeningeal cancer can bring many emotional and practical challenges. Learn how to navigate this journey with Dr. Allison Applebaum, Director of the Caregiving Clinic at Mount Sinai Hospital in NY, and author of Stand by Me, a guide to navigating modern, meaningful caregiving.

Although this was shared with our newsletter subscribers this weekend, there are still books available. Free books for the first 50 people in the U.S. who register AND attend! And free books for the first 10 people outside of the U.S. who register AND attend.

Wednesday, November 12 at 1pm ET!

Register here: https://bit.ly/4ofpTuE

11/04/2025

Did you know that we have free webinars on topics such as tissue donation and genomic sequencing designed to equip rare cancer patients and providers with the information they need to help propel research forward?

👉 Visit the link in our bio or this link to watch and share with your networks: https://rarecancer.org/webinar-recordings

10/30/2025

Many types of can be difficult to diagnose, and because of their frequency, often they tend to not have established treatment plans. Here are a few terms you may encounter when it comes to treatment, but this list certainly isn’t exhaustive.

Comment below any additional terms you have learned through treatment! 👇

10/28/2025

We're so excited to join forces with our partner organization Rein in Sarcoma to discuss how patient-powered donations of tissue and medical data play a vital role in research and treatment breakthroughs for different types of .

Register today for November 19 from 5:30 p.m. to 6:30 p.m. Central Time: https://tinyurl.com/3d8f4yxj

This webinar is free and open to the public, so please share with anyone you think may be interested!

10/23/2025

This week’s Rare Cancer Roundup focuses on NUT Carcinoma, a that can form almost anywhere in the body and is driven by a specific genetic change called a NUTM1 fusion. Thank you to and for the information found in this video. 💙💚

10/21/2025

Knowing key genetics and biomarker terms can help patients better understand their diagnosis and treatment options. Comment any additional terms you’ve encountered on your journey so far! 👇

10/16/2025

If you’ve already had surgery for your and have access to stored tissue, you can still donate through pattern.org to benefit research for your disease! Oftentimes, donated stored tissue can sit on the shelves of institutions for an extended period of time — at pattern.org, we work to make sure it goes to use as soon as possible so we can help to accelerate research outcomes.

Visit pattern.org today to see if your cancer type is eligible for donation. 💙💚

10/14/2025

There are lots of scary myths and misconceptions that surround , so today we’re going to bust a few of those to give you the information you need to know. What are some other myths you have heard before? Comment below. 👇

10/10/2025

Your experience with can help researchers to unlock better treatments and eventual cures. Be a part of the progress today and get started at pattern.org 💙💚