The diagnosis of any new medical condition is daunting. When you are diagnosed with a condition as uncommon as chordoma, challenges are compounded. That’s where the Chordoma Foundation can help. Our patient services are a resource for chordoma patients and their families, providing information, guidance, and support that help patients get the best care possible.

In February 2014, the first ever evidence-based, consensus guidelines for the diagnosis and treatment of chordoma were published in the leading oncology research journal The Lancet Oncology. The recommendations in this paper were the result of the work of a group of nearly 40 chordoma experts from around the world who came together to discuss and determine the best and most effective methods for treating chordoma.

The publishing of these consensus guidelines was an important milestone in the history of this rare disease, since they clearly identify best practices for treatment – best practices that can now be accessed by doctors all over the world.

In order to make these same recommendations accessible to patients, we took the information from The Lancet Oncology paper and created an easy-to-understand booklet for chordoma patients and caregivers. The booklet, Expert Recommendations for the Diagnosis and Treatment of Chordoma, faithfully summarizes the evidence-based treatment guidelines and provides commentary from CF to help you interpret and act upon the experts’ recommendations.

The treatment guidelines for medical professionals and the Expert Recommendations booklet for patients and caregivers are the result of our efforts to help improve healthcare for chordoma patients, and we are pleased to have this resource available to you.

Who will benefit from this booklet?

Newly diagnosed patients will particularly benefit from this comprehensive booklet. It will help you and your caregivers become more informed about chordoma, understand how it is diagnosed, and learn more about the latest treatment recommendations.

If you have already received treatment of some kind, this booklet can help you understand those treatments and any that your medical team is considering as they continue to monitor you and review your scans.

You’ll even find a glossary of medical terms in the back of the booklet to help you get quick access to terminology you may hear from your doctors.

We want this booklet to be beneficial to patients, caregivers, family members, friends of patients, and medical professionals around the world. To that end we have translated the booklet into multiple languages. Today the booklet is available in English, Spanish, and Italian, and we have plans for more languages in the coming months. We will announce these as they become available.

How did this booklet come to be?

We are indebted to the Foundation’s European ambassador, Hans Keulen, for helping to make both the patient booklet and the guidelines for medical professionals a reality. Hans was a point of contact for patients diagnosed with chordoma in Europe. He spent countless hours talking with patients, helping them understand medical information, and sharing his knowledge so that patients could make informed decisions about their course of treatment. Hans provided all of this information one-on-one to patients, but he knew that we needed to be able to provide knowledge about chordoma to more patients, more quickly, and in a format that is easily accessible.

To make this happen, Hans worked with the European Society of Medical Oncology and the Istituto Nazionale dei Tumori in Italy to organize a meeting of medical experts. Nearly 40 chordoma experts from the US and Europe came together in Milan, Italy in 2013 to develop consensus guidelines on the diagnosis and treatment of chordoma. Dr. Silvia Stacchiotti, a member of our Medical Advisory Board, and our Executive Director, Josh Sommer, were lead authors on the consensus paper published in The Lancet Oncology. Once the consensus guidelines were published in The Lancet Oncology, we got to work “translating” the technical medical language of the paper into the patient-friendly format of the Expert Recommendations booklet.

Hans was a chordoma patient himself, and the entire chordoma community suffered a great loss when in late 2015 he passed away from complications caused by his tumor. Before he passed, Hans was able to review the booklet and provide insights and revisions along with our Medical Advisory Board, Education and Outreach Committee, and participants of our 2015 Chordoma Community Conference in New York. Thank you to those of you who took time to review the booklet – your thoughts and comments were invaluable to the process of creating this resource. The published consensus guidelines and the Expert Recommendations booklet are Hans’ legacy, and they have the potential to benefit many patients for years to come.

What’s next?

We want to get the Expert Recommendations booklet into the hands of every chordoma patient. We plan to mail multiple copies of the booklets to clinics around the US so they can provide them to patients as they are first diagnosed.

To get your copy, you can download it today or request a hardcopy (available in English and Spanish) to be mailed to you.

This booklet is only the beginning. We plan to update it annually and make additions and revisions whenever new consensus guidelines are published. In fact, the group of chordoma experts – which has now grown to nearly 60 – met again at the end of last year and are now working on publishing consensus guidelines for the treatment of local recurrence. We hope to see this paper in publication later this year.

In addition, the Expert Recommendations booklet is just the first of many new educational resources for patients we plan to create. Next, we aim to develop a series of guides tailored to patients at each stage of the disease.

I am here as a resource as well, to help you navigate your chordoma journey. Please don’t hesitate to email me at shannon@chordoma.org if there is any way I can assist you.