Explore answers to frequently asked questions about the Chordoma Community Conferences and email firstname.lastname@example.org for more information.
Notice regarding coronavirus/COVID-19
The Chordoma Foundation is closely monitoring the continuing developments pertaining to the novel coronavirus/COVID-19. We want to assure anyone planning to attend our upcoming International Research Workshop (ICRW) or International Chordoma Community Conference (ICCC) in Boston that your health and safety are our top priorities. We are tracking all travel restrictions issued by the U.S. government, as well as information and guidance from the U.S. Centers for Disease Control and Prevention (CDC) and the World Health Organization (WHO).
At this time, there is no plan to cancel or postpone either the ICRW or the ICCC. However, due to the international nature of these conferences, we ask you to please be aware of the possibility of cancellation or postponement as the situation around the world evolves and new information becomes available.
If cancellation or postponement becomes necessary, conference registration fees will be refunded in full, but we would not be able to reimburse you for the cost of travel you have already scheduled or purchased. We encourage you to consider refundable or changeable options for plane tickets, hotel rooms, etc. when making travel arrangements. The room block at the conference hotel, the Boston Marriott Cambridge Hotel, has a cancellation policy of 72 hours before check-in.
We will provide further updates in the coming weeks. Please don’t hesitate to contact us with any questions at email@example.com.
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 (ICRWs), which bring together multidisciplinaryTreatment that involves a team of physicians from various disciplines. In the case of chordoma, these disciplines include sarcoma or bone pathology, radiology, spine surgery or skull base surgery, otolaryngology, radiation oncology, medical oncology, and palliative care. medical professionals and scientists from around the world. A highlight of the ICCCs is a reception and dinner during which the patient community can interact with the doctors and researchers working on better treatments for chordoma. ICCC participants have unique opportunities to learn from members of the Foundation’s Medical and Scientific Advisory Boards and to ask them questions about the latest treatment options and research. Topics covered at ICCCs typically include recent research advances, current treatment recommendations, clinical trials, survivorship care, and quality of life.
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.
How can attending a conference help me become a better advocate for myself or my loved one?
Arming yourself with the latest information about chordoma can help give you the confidence to talk to doctors and ask difficult questions. You’ll also learn skills at the conferences to help you navigate the practical challenges of living with chordoma and make informed decisions regarding care.
How can I prepare for attending a conference?
Come prepared to ask questions and take notes. Saturday’s program will last from approximately 8 AM to 5 PM, so try to get a good rest the night before and wear comfortable clothes. We recommend dressing in layers, as room temperatures may vary. Bring whatever makes you most comfortable.
You may also find it helpful to read our glossary of medical terms, as the medical vocabulary can be difficult to understand. Being familiar with terms helps make the expert talks more understandable.
One of our Patient Navigators will be happy to answer any questions you have about the conference. Just send an email to firstname.lastname@example.org.
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.
Are there any social events outside of the conference where I can connect with other attendees?
An off-site post-conference gathering is being organized by volunteer community members for Saturday, July 18, 2020. You can learn more and RSVP here. Please indicate during registration for the 2020 ICCC that you would like to be contacted about other social events around the conference so we can put you in touch with the volunteers as other plans are determined.
Can I share a hotel room with another attendee?
You are welcome to coordinate room sharing with others attending the conference. If you are interested in sharing a room, please email us at email@example.com and we will try to help match you with someone. Please note that individuals who share a room are responsible for coordinating payment to the hotel.
Where can I connect with other community members?
A great way to connect with others attending the conference, as well as the wider chordoma community, is through Chordoma Connections. This private, online community is a place where individuals affected by chordoma can come together to exchange information, share experiences, and support one another. More than 900 patients and caregivers have already joined and are discussing topics such as clinical trials and systemic therapies, navigating insurance appeals, and sharing stories of inspiration.
Is there a discount for several attendees from the same family?
There is not a discount for multiple attendees from the same family at this time. Each family member must register separately.
Do I have to stay at the Boston Marriott Cambridge?
No, but many people find it most convenient to stay at the hotel to avoid traveling across town. Staying at the Boston Marriott Cambridge will also give you the opportunity to socialize with many other participants outside of the conference.
For a list of other hotels near Massachusetts General Hospital, visit their website.
Websites like Airbnb and HomeAway may offer other nearby options.
Please see our 2020 ICCC Hotel and Travel page for more detailed information about booking a room at the Boston Marriott Cambridge Hotel.
How can I sponsor the conference?
To become a sponsor, please review our sponsorship opportunities packet
and contact Susan Horrell, Partnerships Lead, at firstname.lastname@example.org
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