I had the privilege to interact with desmoid tumor patients at the annual #DTRF meeting in Chicago. An inspiring & motivating event! Great to talk to Athina Merckx, granddaughter of the greatest Belgian cyclist ever, brave desmoid patient and fantastic fundraiser #Athinasride
@crighent.bsky.social

Research moves slowly. Rare diseases don't—so patients aren't waiting Patients with rare diseases are increasingly working to find and fund their own cures. But should they have to?

The Desmoid Tumor Research Foundation is featured in this Newsweek article about rare diseases. Getting a rare disease diagnosis is difficult and destabilizing. Patient advocacy groups help in so many ways #DesmoidTumorAwarenessMonth #DTRF www.newsweek.com/research-mov...

Ostro and Desmoid Tumor Research Foundation Join Forces to Improve Patient Resource Access Ostro collaborates with the Desmoid Tumor Research Foundation to enhance access to essential resources for desmoid tumor patients as Rare Disease Month approaches.

Ostro and Desmoid Tumor Research Foundation Join Forces to Improve Patient Resource Access #USA #New_York #Ostro #DTRF #Desmoid_Tumors