Frequently Asked Questions

Q. What are the regional Chordoma Community Conferences?
In 2015, we began hosting regional Chordoma Community Conferences in partnership with leading medical centers in the U.S. and Europe. The regional conferences aim to bring the latest updates in chordoma science and care to patients and caregivers in their own communities, connecting them with one another, and with the experts serving their region. While all are welcome to attend, most regional conference participants either live in the immediate vicinity, or receive treatment from the hosting medical center. As such, experts from the hosting institutions are prominently featured on the agenda at these gatherings.  

Q. What are the International Chordoma Community Conferences?
International Chordoma Community Conferences (ICCCs) are typically held every two years and take place following the International Chordoma Research Workshops (ICRW), which bring together multidisciplinary medical professionals and scientists from around the world. In 2016, ICCC attendees included patients, caregivers, family members, and friends from 21 states and five countries.

Holding the ICRW and ICCC concurrently allows us to present the latest research updates heard at the ICRW to patients and caregivers from around the globe. A highlight of the ICCCs is a reception and dinner where the patient community can interact with the doctors and researchers working on better treatments for chordoma. ICCC attendees also have the unique opportunity learn from the Foundation’s Medical and Scientific Advisory Boards by asking them questions during the Ask the Experts panel. 

Q. How can attending a conference help me become a better advocate for myself or loved one? 
A. Arming yourself with the latest information about chordoma can help give you the confidence to talk to your doctors and ask questions. You'll also learn navigation skills at the conferences, which aim to help patients research their own situations and allow them to make informed decisions regarding care.

Q. How can I prepare for attending my first conference?
A. Come prepared to ask questions and take notes. Saturday's program typically lasts from 8 AM to 5:30 PM, so try to get good rest the night before and wear comfortable clothes. We recommend bringing a sweater to wear inside the hotel, as room temperatures may vary. 

You may also find it helpful to read the glossary of medical terms in the back of the Expert Recommendations booklet, as the medical vocabulary can be difficult to understand. Being familiar with terms helps make the expert talks more understandable.

Q. Do community members typically attend more than one conference? 
Yes! Many community members attend several conferences to re-connect with old friends and make new ones. Each conference offers the most up-to-date information on chordoma research and treatment options. 

Q. Are there any social events outside of the conference where I can connect with other attendees?

A. Several community members typically organize a dinner before or after the conference. Stay tuned for details!

Q: Can I share a hotel room with another participant? 
A: Yes, we can help match you with a roommate. Please email for more information. Once matched, participants are responsible for coordinating payment.

Q: Where can I connect with other conference attendees?
A: A great way to connect with other participants or the patient community is to interact on the Survivors Facebook page, a private group started and moderated by chordoma community members. Email the group's administrators at to request access. 

Q: Is there a discount for multiple registrants? 
A: There is not a discount for multiple registrants. 

Q: Are there discounts available at nearby hotels?
Special rates are available at several hotels in the Rochester, MN area for our upcoming regional Chordoma Community Conference at Mayo Clinic. Please see the travel page for a full listing of these hotels.