Chondrosarcoma Foundation will present at Upcoming Medical Events
The Chondrosarcoma Foundation will present the findings of their first data analysis through Poster Presentations of the Chondrosarcoma Patient Registry at two upcoming medical conferences. The National Organization for Rare Diseases (NORD), National Summit is scheduled for Sunday October 20 – Tuesday, October 22 in Washington, DC. We have also been approved to present a Poster at CTOS 2024: Connective Tissue Oncology Society’ Annual Meeting scheduled for November 13 -16 in San Dan Diego, CA. We are looking forward to presenting our results and having a dialogue about how our findings can contribute to enhancing research, clinical trials and medical practice.
In addition, President Jeff Kramer will be a panelist for NORD’s Rare Cancer Day Webinar: “How YOU Can Help! Patient Driven Research in Rare Cancers”. In advance of Rare Cancer Day on September 30, NORD is hosting a free community webinar all about rare cancer research and the role that patients and caregivers can play. It takes place Friday, September 27 at 2:00 p.m. The panel members include Janet Mauro, who manages our IAMRARE Patient Registry Program, as well as Denise Robinson at the EHE Foundation, Jeff Kramer at the Chondrosarcoma Foundation who will be speaking on how they have developed patient registries to advance research in their disease states.
Description: Your patient data is a valuable resource. Rare cancer patient registries play a pivotal role in tracking the natural history and course of cancers over time. In turn, registry data can inform future research aimed at developing potential treatments. Since research on rare cancers is lacking, rare cancers are difficult to diagnose and treatment options are limited, rare cancer registry data is particularly important. This will be a 50-minute, cost-free webinar featuring experts in rare cancer registries and natural history studies, along with rare cancer patients and advocates. We will explore how patient advocacy groups can manage their own patient registries, and how those registries can empower patients and researchers to overcome challenges faced by people affected by rare cancers. This webinar is brought to you by NORD’s Rare Cancer Coalition and is suitable for patients, caregivers, advocates, health professionals and the public.
This webinar recording will be available on our Rare Cancer Day page starting September 30th. Click here to RSVP: https://rarediseases.zoom.us/webinar/register/WN_j5XxVIpoS3u3zlLpV2OqTA#/registration
