SUWANEE, Ga., June 10, 2026 (GLOBE NEWSWIRE) — The Facial Pain Association (FPA) is proud to announce the one-year anniversary of the Facial Pain Registry, a landmark patient data initiative developed in partnership with the National Organization for Rare Disorders (NORD ®) on the IAMRARE® platform. In its first year, the registry has enrolled 740 participants who have completed all three available surveys, establishing a meaningful foundation of patient-reported data that researchers are already eager to access.
Neuropathic facial pain conditions, including trigeminal neuralgia, persistent idiopathic facial pain, and related disorders, are among the most debilitating and least understood conditions in medicine. Patients frequently endure years of misdiagnosis and ineffective treatment before finding relief. The Facial Pain Registry was created to change that, by giving researchers direct access to the real-world experiences of people living with these conditions.
“The first year of the Facial Pain Registry represents something we have never had before – a structured, growing body of data that reflects the true experience of people living with neuropathic facial pain,” said Melissa Baumbick, Chief Executive Officer of the Facial Pain Association. “Every participant who completed a survey has contributed something that no clinical study alone can capture: their story. That data has the power to help shape research, accelerate diagnosis, and ultimately change lives.”
A Growing Body of Research Interest
In its first year, the registry has attracted significant interest from both academic researchers and the pharmaceutical industry. Researchers from leading institutions have submitted inquiries exploring questions that range from the quality-of-life impact of trigeminal neuralgia to the sociodemographic profile of neuropathic facial pain patients, the relationship between trigeminal neuralgia and temporomandibular disorders (TMD), and the potential of non-invasive brain stimulation techniques as treatment options. Pharmaceutical companies have also expressed interest in the registry as a resource for understanding the prevalence and lived experience of these conditions.
The FPA is currently finalizing its process for evaluating formal research proposals and expects to begin accepting and reviewing submissions by fall 2026. This milestone will mark a significant step forward, moving the registry from data collection into active research partnership.
New Surveys on the Horizon
Building on the success of the registry’s first three surveys, the FPA is currently developing two additional surveys to deepen the data available to researchers. The first will focus on medications — capturing what treatments participants have tried, their effectiveness, and their side effects. The second will address mental health, exploring the psychological and emotional toll that neuropathic facial pain takes on those who live with it daily. Both surveys will be available on the IAMRARE® platform and are expected to launch later this year.
A Global Community of Participants
Registry participants represent a truly global community. While 87% of current participants are based in the United States (with California, New York, Pennsylvania, Ohio, Illinois, and Arizona among the most represented states), 13% of participants come from countries around the world. The FPA plans to translate the registry into additional languages to expand international participation and ensure that the data reflects the full diversity of the facial pain community.
How to Participate
Participation in the Facial Pain Registry is open to anyone living with neuropathic facial pain. Enrollment is free and can be completed online https://www.facepain.org/facialpainregistry/. Participants who enrolled during the registry’s first year will receive an invitation to update their information on their one-year anniversary. This is an important step that allows researchers to track how a patient’s experience might change and evolve over time.
Healthcare providers who treat patients with facial pain conditions are encouraged to share information about the registry with their patients.
About the Facial Pain Association
The Facial Pain Association is the leading nonprofit organization dedicated to supporting, educating, and advocating for people living with neuropathic facial pain. Through its educational resources, patient support programs, advocacy efforts, and research initiatives, the FPA works to improve the lives of patients and advance the understanding of facial pain conditions among healthcare providers and the broader public. For more information, visit www.facepain.org.
About NORD and IAMRARE®
The National Organization for Rare Disorders (NORD) is a nonprofit organization committed to the identification, treatment, and cure of rare diseases. The IAMRARE® Registry Program supports the development of patient-powered natural history registries for rare disease communities. For more information, visit rarediseases.org.
A photo accompanying this announcement is available at https://www.globenewswire.com/NewsRoom/AttachmentNg/628cf5d5-3395-4891-989b-30d11c93500d
CONTACT:
Natalie Merrithew
+18009233608
nmerrithew@facepain.org
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