Chordoma Foundation

Facing a new diagnosis

If you or a loved one has recently been diagnosed with chordoma, we want you to know that you are not alone. The Chordoma Foundation and many chordoma survivors are here to support you throughout your entire journey with chordoma, from diagnosis through to survivorship. We believe passionately that every chordoma patient should be able to make informed decisions that will lead to the best possible outcomes.

The steps on this page are meant to help you find the information and resources you need to understand chordoma and get the best care possible. Come back to this page any time you feel like you’re lost, overwhelmed, or need some direction on what step to take next.

Step 1. Contact our Patient Navigators

Learning you have chordoma can be overwhelming. Our Patient Navigators provide free, confidential, one-on-one support to help you learn about your new diagnosis, understand the treatment guidelines, locate chordoma experts, connect you with others, and arm you with resources so you can become your own best advocate. We are here with you every step of the way.

Request help from a Patient Navigator »

 

Step 2. Learn about chordoma

If you’ve just been told you have chordoma, you’re probably asking what is chordoma, how do I make a decision about my treatment options, and where do I go to get the best care?

Knowledge is power when it comes to dealing with chordoma. The pages, resources, and videos below contain information you need to know about the disease so you can make the most educated decisions about your care.

Understanding chordoma

General information about the disease including who is affected, causes and risk factors, tumor locations, and subtypes.

Educational materials

Booklets and pamphlets containing treatment information and guidelines available for download or as printed copies.

Expert Answers video series

Short videos with helpful information from chordoma medical experts and community members.

Pediatric and young adult chordoma

Information specific to children and young adult patients (up to age 35 years).

Frequently asked questions

Answers to questions commonly asked by chordoma patients and caregivers.

Chordoma Foundation YouTube channel

Videos of past community conferences, including Ask the Expert Q&A panels.

 

Step 3. Plan your treatment

Your first treatments will have a major impact on your outcome. It is very important to evaluate your options carefully by getting multiple opinions from doctors who have experience treating chordoma. Chordoma tumors typically grow slowly, so unless your doctors are saying you are in immediate or critical danger, you have time to decide what to do to get the best treatment. Our treatment pages will help you learn about the way chordoma should be treated and our Doctor Directory can help you locate chordoma experts.

 

Step 4. Stay up-to-date

Chordoma Foundation e-newsletters and periodic email updates are a great way to stay connected with us and get the latest news. You will hear about research advances, clinical trial news, fundraising initiatives, and events like our community conferences. Sign up to receive our emails so we don’t lose touch.

You can also like us on Facebook or follow us on Twitter @ChordomaFDN to find helpful resources and get our latest news.

 

Sign up for emails

Follow us on Twitter

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5. Connect with the Chordoma community

Connecting with others who have been through their own journey with chordoma can provide you with support, perspective, and encouragement when dealing with a chordoma diagnosis. Some ways to find support include:

Chordoma Connections

Our private online community, Chordoma Connections, is a place for all those affected by chordoma to connect with and support each other. No matter where you are in your journey with chordoma, your role in that journey, or your location in the world, there is a place for you in Chordoma Connections. Join the community today!

Peer Connect Program

Support from someone who has been there can make all the difference. Peer Connect is a free, confidential peer-to-peer support program that connects anyone touched by chordoma with another person whose experiences with chordoma are similar. Peer Guides are available to support patients who are newly diagnosed, patients in active treatment, survivors, caregivers, family members, or friends.

Chordoma Community Conferences

Our regional and international community conferences provide unique opportunities to hear directly from leading chordoma doctors and researchers, learn more about the work of the Foundation, and connect with a community of peers who share similar experiences.

Chordoma Support and Survivors Group Facebook Group

Newly diagnosed patients, chordoma survivors, and family members can connect with others in a chordoma community through a private Facebook group which is moderated by two seasoned chordoma survivors. This close-knit community exists to help answer questions, share personal experiences, offer guidance, and serve as encouragement throughout your journey with chordoma. There are over 2,400 members in 83 countries in this private/closed forum and when you join, you’ll be asked to answer simple questions that only group moderators can see. Note posts within the group are visible only to group members.

 

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