Patient Advocacy in Rare Sinonasal and Skull Base Tumors?

Chordoma Foundation emphasizes that even without major research budgets, any rare disease community can replicate certain fundamentals:

• Build a patient database and maintain regular, meaningful contact.
• Provide direct access to a real person for guidance.
• Facilitate peer-to-peer connection to reduce isolation.
• Identify and share specialist lists so patients can find experienced providers.
• Partner with clinicians to ensure guideline dissemination and appropriate referrals.

Similarly, SMARCB1 Hope advises would-be advocates to:

• Commit for the long term— meaningful change may take 10-20 years.
• Avoid funding in isolation—seek to leverage established networks and review processes.
• Stay adaptable—be willing to broaden focus strategically to strengthen sustainability.
• Focus on relationships—with researchers, clinicians, media, and other advocacy groups. The Clinician–Advocate Partnership

The interviews reveal a shared vision: Patient advocacy groups and physicians are most effective when they operate as true partners. Otolaryngologists are often the first to diagnose these rare tumors and can:

• Initiate early contact with advocacy groups;
• Provide educational sessions at patient meetings;
• Participate in or host research workshops; and
• Encourage multidisciplinary and inter-institutional collaboration.

By doing so, clinicians not only improve individual patient experiences but also contribute to a broader ecosystem that accelerates progress in understanding and treating rare sinonasal and skull base tumors.

Conclusion

The Chordoma Foundation and SMARCB1 Hope offer compelling case studies in how determined, patient-centered advocacy can change the trajectory for those facing rare cancers. For physicians, these organizations are not just referral destinations—they are potential collaborators, sources of cutting-edge information, and allies in the mission to ensure every patient receives expert, informed, and compassionate care from the outset.

As Cassie from SMARCB1 Hope reflected, “If we bury ourselves in our very narrow field, we’ll go nowhere. We have to be strategic, broaden the scope, and keep building relationships.” And as Shannon from the Chordoma Foundation affirmed, “We couldn’t do any of it without the patients. Staying connected to them is what makes everything else possible.”

For the otolaryngology community, the message is clear: Engage with advocacy early, respect and harness the knowledge of rare disease patients, and work together across disciplines and borders. In rare cancer care, these partnerships are essential.

Dr. Woods is a consultant otolaryngology–head and neck surgeon at Beaumont Hospital/ RCSI, Ireland, an honorary clinical associate professor at the Royal College of Surgeons in Ireland, and co-chair of the Clinical Care and Patient Advocacy Committee of the AHNS Skull Base Surgery Section.