Get the support you need
We offer a variety of support options to help you through your chordoma journey. Whether you’re looking to connect with others who understand what you’re going through, find answers to your questions, or learn more about chordoma, we’re here to help. From our online community and support groups to expert resources and one-on-one support, we have the tools you need to feel informed, supported and empowered.
Find community in Chordoma Connections
Connections is our online platform designed to bring together chordoma patients, survivors, and caregivers from around the world. Through this supportive community, you can share experiences, ask questions, and connect with others who understand what you’re going through. Join a group specific to your country, and use the translation feature to read and create posts anywhere on the platform.
Online support groups across Europe
Virtual support groups provide a live, safe space online to connect with others who understand what you’re going through and offer emotional support and practical advice. These groups can help you feel less alone and more empowered.
Germany – led by our Ambassador Irene. The group meets every third Tuesday of every other month at 19:30 CEST/CET. Our 2024 meetings are scheduled for: January 16, March 19, May 21, July 16, September 17, and November 19. The language of communication in this group is German.
Netherlands – led by our Ambassador Wally. The group meets every third Wednesday evening (19:30 CEST/CET) and third Friday morning (10:30 CEST/CET) of every other month. Our 2024 meetings are scheduled for: January 17 and 19, March 15 and 20, May 15 and 17, July 17 and 19, September 18 and 20, and November 20 and 22. The language of communication in this group is Dutch.
Spain – led by our Ambassador Antonio. The group meets every last Wednesday of every other month at 19:30 CEST/CET. Our 2024 meetings are scheduled for: September 25 and November 27. The language of communication in this group is Spanish.
Our Ambassadors
Supporting patients across Europe
Our Ambassadors are passionate volunteers who play a key role in supporting chordoma patients in their own region. They help connect patients to local resources and each other, ensuring that no one faces this journey alone, no matter where they are. Ambassadors also share important information with hospitals to raise awareness about chordoma and help patients find local doctors who specialize in treating this rare disease.
But their efforts don’t stop there: Our Ambassadors also host online support groups where patients and families can talk, share experiences, and find comfort. They work with local organizations and doctors to improve access to care and organize events to raise awareness and funds, bringing people together in the fight against chordoma. They also helped develop our country-specific resources. Our Ambassadors are truly making a difference for chordoma patients and their families across Europe.
