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Rare Cancer Patient Navigator


About the Chordoma Foundation: At the Chordoma Foundation, we help patients and families dealing with chordoma — a rare bone cancer — take on their disease armed with information from the world's leading medical experts as well as support from a community of peers. At the same time, we help doctors, researchers and companies work together to accelerate the development of better treatments for the disease.

Started in 2007, the Chordoma Foundation is a nonprofit organization created by patients and families to be an agent of change on behalf of the chordoma community. We envision a future in which everyone affected by chordoma is able to overcome their disease and maintain their quality of life. To realize this vision, we invest in three essential and mutually-reinforcing program areas: Research to find better treatments, Healthcare Improvement to drive better patient care, and Patient Services to help patients overcome barriers and get the best care possible.

Driven by a very personal sense of urgency, we are determined not just to create better outcomes for those who face chordoma in the future, but to improve the lives of those dealing with it today. The slow, incremental progress typical for rare diseases is fundamentally unacceptable to us. Instead, we were founded on the belief that our small community can make an outsized impact if we redefine the role that a patient organization plays.

We are seeking a compassionate and engaging individual to provide education, navigation, and support to chordoma patients and caregivers to help them get the best care possible and give them a feeling of hope for the future.


  • Provide direct, one-on-one patient navigation services to patients and caregivers over the phone and electronically (email, messaging, etc.) with a focus on helping them overcome barriers, get the best care possible, and achieve good quality of life
  • Educate patients and their family members on chordoma, current treatment recommendations, treatment modalities, clinical trials, or any other presenting need
  • Engage regularly with members of the chordoma community through our online community, Chordoma Connections
  • Manage and execute our Peer Connect program to effectively provide one-on-one peer support to any patient or caregiver who requests it
  • Assist with planning and facilitation of annual Community Conferences
  • Additional duties, as assigned


  • Bachelor’s degree in social work, nursing, health education, or similar; Master’s degree preferred
  • Minimum of 5 years experience in related field
  • Ability and willingness to learn, understand, and communicate extensive information about chordoma, treatments, side effects, symptom management, and additional resources
  • A strong sensitivity and compassion for those affected by a rare disease such as chordoma coupled with an innate ability to empathize with the loss and painful journeys experienced by our constituents
  • Superior communication and interpersonal skills, both verbal and written
  • A service mentality and a desire to meet the needs of those who seek the Foundation’s assistance
  • Scientific and/or medical field experience preferred
  • Excellent organizational skills and ability to multi-task
  • Ability to work and manage projects independently
  • Comfort with technology, willingness to work in a paperless environment, and an ability to learn new applications quickly. At a minimum, proficiency in Microsoft Word, Excel, and PowerPoint is expected.
  • Bilingual/multilingual a plus, but not required
  • Ability to travel occasionally (2-4 times per year) is expected
  • To qualify, applicants must be legally authorized to work in the United States and should not require now, or in the future, sponsorship for employment visa status


  • Competitive salary commensurate with experience
  • 100% employer sponsored health insurance plan
  • Dental and vision insurance
  • Short- and long-term disability insurance
  • Life insurance
  • SIMPLE IRA with company matching
  • Holidays and paid time off
  • Flexible work schedule

If this sounds like the job for you, we'd love to hear from you! Please apply online at

The Chordoma Foundation is proud to be an equal opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status. We can only review candidates with valid US work authorization at this time.