A Milestone in Headache Surgery Research
We are thrilled to celebrate Dr. Merel Hazewinkel, the first PhD student in headache surgery, who has successfully defended her thesis at Erasmus University in Rotterdam. Her work is a beacon of progress for patients, surgeons, and researchers alike.
We are proud to have contributed to the printing and open access publication of her thesis, ensuring this important work remains freely available and reaches our entire community.
Interested in learning more about Dr. Hazewinkel’s findings?
You can access her publication here: Nerve Decompression Surgery in the Head and Neck – From Novel Screening to Long-Term Outcomes
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Voices from the Community:
What Patients with Occipital Neuralgia Are Facing
We partnered with Patients Rising to better understand the unmet needs within the Occipital Neuralgia community. This initiative was prompted by a widespread dissatisfaction with the healthcare experience—something many patients found difficult to articulate and something we sought to better understand through data and lived experience.
The survey uncovered several important findings, including prolonged time to diagnosis, insurance-related barriers, variability in treatment approaches, and other challenges that continue to impact patient care.
Trusted Partners & Resources
Occipital Neuralgia Canada is a patient-driven website created by Karla Gronsdahl, PhD. Karla has turned her personal journey with occipital neuralgia into purpose—creating a platform that helps individuals better understand their symptoms, explore treatment options, and navigate the often complex realities of insurance and care access.
Karla first connected with our foundation through one of our patient education interviews, which helped guide her to an experienced surgeon—an example of how access to the right information can truly change a patient’s path! We are grateful to collaborate with individuals like Karla who are making a real difference in the community.
This website serves as a particularly valuable resource for individuals in Canada seeking region-specific guidance and support. Together, we are working to ensure patients feel informed, supported, and empowered to access the care they deserve.
The Facial Pain Association (FPA) is the leading nonprofit and advocacy organization dedicated to improving the lives of people living with neuropathic facial pain conditions, including trigeminal neuralgia. Serving everyone affected by facial pain, including those living with it, their families, care teams, and healthcare professionals, the FPA provides educational resources, one-on-one and group support, and advocacy initiatives that help navigate the complex physical, emotional, and financial challenges of living with facial pain.
The FPA connects people with accurate information, leading medical specialists, and a compassionate community. Their recently launched Facial Pain Registry is a longitudinal research database that empowers members of the facial pain community to contribute to and benefit from cutting-edge research. The organization also works to raise awareness among healthcare professionals and the public, while supporting research into better access and treatment.
With a mission rooted in hope and empowerment, the FPA is a trusted partner for the facial pain community, their families, and clinicians worldwide.
