Chordoma Foundation

New service will help patients and caregivers navigate life with chordoma

Patient and DoctorDealing with chordoma can be a difficult, confusing, and overwhelming experience. Throughout their journey with the disease, patients, and caregivers are faced with many challenges: from making sense of medical information, to finding experienced physicians, to coordinating the logistics of getting treatment and follow up care. The path they take and decisions they make along the way can have a significant impact on a patient’s overall outcome and quality of life; quite literally, it can make the difference between having a chance of being cured and suffering through a long battle with the disease.

Given how high the stakes are, at the Chordoma Foundation, we believe that everyone affected by chordoma ought to have somewhere to turn for advice and guidance in navigating all of the questions and challenges that the disease poses. Over the past seven years, our staff and volunteers have responded to requests and questions from hundreds of patients and caregivers; however, the demand for this support is stretching the Foundation’s current capacity, and many requests require a level of expertise that we currently do not have on staff.

To address this unmet need, we are pleased to announce that we plan to launch a Patient Navigation Service that will provide in-depth, one-on-one assistance to patients and caregivers from a knowledgeable medical professional. Patients and caregivers will be able to access this service through a variety of communications channels including phone, email, and social media.

Some examples of the type of assistance this service will provide include:

  • Answering questions and explaining important concepts about chordoma and treatment options.
  • Facilitating referrals to experienced physicians and treatment centers.
  • Identifying and providing information about clinical trials for which a patient could be eligible.
  • Recommending home health services, medical equipment suppliers, and other relevant vendors and service providers.
  • Providing information about programs and organizations that offer travel and lodging assistance, co-pay relief, or other benefits.
  • Providing information to support requests and appeals to insurance companies.

Launching this new Patient Navigation Services is the first in a series of steps we plan to take to better serve the chordoma community across the world. Funding permitting, next steps will include developing and distributing more in-depth and understandable educational materials, expanding our Peer Support Program to help more members of the patient community connect with and provide emotional support to one another, and starting a patient registry to learn from the experiences of every patient.

The launch of our Patient Navigation Service has been made possible, in part, through a $40,000 one-year grant from Celgene, a biopharmaceutical company specializing in the development of therapies to treat cancer and inflammatory disorders.

We are currently seeking additional contributions to sustain this important new program, and continue enhancing our services to the chordoma community. To learn how you can help, please contact Josh Sommer, Executive Director, at josh@chordoma.org or (919) 809-6779.