Expert care can make a lasting difference for people facing chordoma, helping manage the disease and improve quality of life. An experienced medical team is especially important at diagnosis, when the first treatment offers the best opportunity for long-term disease control.
But finding doctors who have experience with chordoma isn’t always easy, and travel costs, medical bills, and insurance denials can make it challenging to access care.
To help patients and caregivers find and access care, we’ve recently strengthened two sources of support: our redesigned Doctor Directory makes doctors’ chordoma experience easier to understand, and our new partnership with Patient Advocate Foundation offers hands-on help with practical barriers to treatment. Both support our 2030 Strategic Plan objective to help more people benefit from the best available care.
Improved Doctor Directory
Our Doctor Directory helps patients and caregivers find and contact doctors around the world who have experience treating chordoma. Recent improvements make it easier to understand their experience and allow more doctors to be listed:
- New profile badges highlight doctors’ participation in chordoma research and professional education. Other badges identify doctors who treat a higher volume of chordoma patients or whose practices are exclusively pediatric.
- Updated inclusion criteria, developed with guidance from our Medical Advisory Board, allow more pediatric specialists to qualify. They also introduce an “Emerging Experience” pathway for qualifying doctors in low- and lower-middle-income countries.
New! Additional hands-on help with barriers to care
Our new Care Access Program, in partnership with Patient Advocate Foundation (PAF), is expanding the practical support available to chordoma patients in the United States.
PAF case managers can help with:
- Insurance challenges, including treatment authorizations, coverage denials, and appeals.
- Benefits and disability programs, including understanding eligibility and navigating applications.
- Medical bills and financial concerns, including finding assistance programs and working to resolve medical debt.
- Transportation and lodging, including finding resources that may help with travel for care.
Case managers can work directly with insurers, healthcare providers, employers, and other organizations to address these challenges and connect patients with available resources. (The case management program does not provide direct financial grants.)
We also encourage patients enrolled in clinical trials to leverage our Clinical Trial Assistance Program, which reimburses patients worldwide for travel costs associated with participating in eligible trials.
Start with our Patient Navigators
Patients and caregivers looking for a doctor, weighing treatment options, or facing a practical challenge can start by contacting a Chordoma Foundation Patient Navigator. Our Navigators can talk through individual needs, help identify available support, and make a referral to PAF when appropriate.