Facial Pain Association and National Organization of Rare Disorders Partner to Launch the Facial Pain Registry
The Facial Pain Registry is open to participants worldwide to advance understanding and treatments for rare conditions causing intense and debilitating pain in any part of the face, including the eyes and mouth.
SUWANEE, Ga., June 11, 2025 /PRNewswire/ -- Today, the Facial Pain Association (FPA) in partnership with the National Organization for Rare Disorders (NORD®) launched the Facial Pain Registry, a study with global reach to learn more about neuropathic facial pain. The study will include trigeminal neuralgia (TN) along with other cranial neuralgias. TN is the most common form of neuropathic facial pain, causing severe pain that can present as sharp, electric shock like or a dull throbbing and aching, varying in intensity and length per episode. Left misdiagnosed and/or untreated, facial pain can have debilitating effects on a person's life.
The Facial Pain Registry provides a vital platform for people living with facial pain to share their experiences, collecting invaluable data that can help to drive medical discoveries and influence healthcare policies. Facial pain is a rare disorder that occurs in approximately four to five out of every 100,000 people. The Office of Rare Diseases (ORD) of the National Institutes of Health (NIH) considers trigeminal neuralgia a rare disease because it affects fewer than 200,000 people in the US at any time.
It may be classified as either acute or chronic and can be triggered by factors that don't typically cause pain – touching the face, cold air, chewing, or speaking - or neuropathic factors (nerve pain). In some instances, this type of pain can become a long-term condition. If misdiagnosed or untreated, neuropathic facial pain can severely impact quality of life.
"By gathering information on individuals with a specific condition, registries like the FPA's, allow for a better understanding of the natural history of the disease and can identify risk factors for the development of the disease," said Dr. Raymond Sekula, Chair of the FPA's Medical Advisory Board and Professor of Neurological Surgery at the Columbia University Department of Neurological Surgery. "In addition, registries can be used to evaluate the effectiveness of new treatment and to monitor safety of those new treatments. Ultimately, registries play a vital role in advancing medical research and improving patient care. The FPA's staff, Board of Directors, members of the Medical Advisory Board, and outside advisors have spent more than two years carefully designing and crafting a registry in partnership with the National Organization for Rare Disorders (NORD®) to provide a registry that is mobile-friendly, secure, easy-to-use, and most importantly, holds the potential to really help patients with facial pain in the near and distant future."
To help drive awareness and participation, the Facial Pain Association will host educational webinars and conference discussions on various aspects of the registry. Ongoing surveys will be developed, focusing on various topics to provide insight into unique experiences.
"The Facial Pain Registry is a great opportunity for the facial pain community to tell their unique stories and let data inform the work being done by researchers," said Melissa Baumbick, CEO of Facial Pain Association. "The success of the registry is dependent upon community participation. Our goal is to enroll anyone, and everyone affected by neuropathic facial pain, including trigeminal neuralgia and other cranial neuralgias."
The Facial Pain Registry is a natural history study that consists of electronic surveys to collect information about the patient experience and disease progression. Patients, or their caregivers or guardians, can enter information from anywhere in the world. The data is confidential and stored securely in the IAMRARE® online portal. The Facial Pain Association may share the data with individuals or institutions conducting research or clinical trials, as approved by the study's governing Registry Advisory Board, which includes researchers, medical professionals, FPA staff, and patient advocates.
The Facial Pain Association is launching the study in collaboration with, an independent nonprofit that built its natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. The Facial Pain Association is a member of NORD®, and the two organizations work together to eliminate the challenges that rare disease patients face. "This new study has tremendous promise to build strong partnerships and engage the patient community to address current knowledge gaps for facial pain. NORD® is thrilled to be a part of driving research and innovation-based outcomes for all the families in the facial pain community," said Janine Lewis, Director of Research Operations, NORD®.
Your voice matters. Let data tell your story.
For more information, visit https://www.facepain.org/facialpainregistry.
About Facial Pain Association:
The Facial Pain Association (FPA) is a registered non-profit, 501(c)(3) volunteer-led and community-focused organization. We are the largest patient organization supporting all people affected by neuropathic facial pain, leading the world in resources for information and healthcare guidance. Through programs of education, personal support, and advocacy efforts, the FPA supports patients, their loved ones and caregivers, and healthcare professionals who diagnose and treat people affected by facial pain. For more information about the FPA, visit www.facepain.org.
Contact:
Sarah Winner
Marketing, Communications, and Events Manager
swinner@facepain.org
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SOURCE Facial Pain Association