What Happened. NIDCD recently issued FY2026 guidance indicating that grant applications whose primary focus is dysphagia, where communication is not impacted, will no longer be considered within its mission area. While NIDCD has funded important dysphagia research for many years and remains a valued partner, this development highlights a longstanding challenge: dysphagia does not have a clearly defined federal research home despite affecting millions of Americans.
Why It Matters. Millions of Americans live with swallowing disorders resulting from stroke, head and neck cancer, neurodegenerative diseases, developmental disorders, critical illness, aging, and other conditions. Dysphagia can lead to malnutrition, dehydration, aspiration pneumonia, social isolation, caregiver burden, and increased healthcare costs. Reduced research attention threatens progress toward better prevention, diagnosis, treatment, and quality of life.
The Bigger Problem. This moment did not create the problem—it revealed it. Dysphagia falls across multiple diseases and medical specialties, making it difficult to fit within existing federal research structures. As a result, swallowing disorders have lacked a coordinated national strategy despite their significant health and economic impact. We believe this challenge requires a long-term solution that extends beyond any single NIH agency or institute.
Call for Community Input. To help inform future advocacy efforts, we are gathering information from patients, caregivers, clinicians, researchers, and industry partners. We invite individuals to share their contact information, their connection to dysphagia, and how swallowing disorders have affected their lives, research, clinical practice, or organization. These stories and experiences will help demonstrate the real-world consequences of inadequate federal attention to swallowing disorders.
Looking Backwards. In 2025, the NFOSD partnered with the Thyroid, Head, and Neck Cancer Foundation to host a meeting with the FDA. The purpose of the meeting was to amplify the voice of the patient to help the FDA and other key stakeholders better understand the lived experience of those with dysphagia and its impact on daily life. If you would more information, view the Voice of the Patient Report.
Looking Forward. Together, we will work toward a future in which swallowing disorders receive the recognition, coordination, and research support they deserve. This includes exploring federal policy solutions that could establish a national strategy for dysphagia research, care, education, and awareness. The voices we collect today will help shape that effort and ensure that people living with swallowing disorders are heard.
We’d love to hear from you. Click below to take a brief dysphagia impact survey. Your voice matters!
This initiative is supported by the following organizations
(This initiative is organized by the National Foundation of Swallowing Disorders)
