Rare Disease Day 2025: Why It Matters for the Trigeminal Neuralgia Community
What is Rare Disease Day?
Rare Disease Day is held annually on 28 February to raise awareness of rare diseases and their impact on daily life. It brings together patients, families, healthcare professionals, researchers, and policymakers to advocate for better diagnosis, treatment, and support.
Theme for 2025: “More Than You Can Imagine”
This year’s theme, “More Than You Can Imagine,” highlights the hidden struggles of those living with rare conditions. Although each rare disease may affect only a small number of people, it impacts millions worldwide.
Sharing experiences helps others understand the realities of Trigeminal Neuralgia (TN) and why investment in better treatments and medical research is essential.
Why is Trigeminal Neuralgia a Rare Disease?
A rare disease in the UK is defined as a condition that affects fewer than 1 in 2,000 people. TN falls into this category, with studies estimating that only 8 to 12.6 people per 100,000 receive a diagnosis each year.
Many people with TN experience:
- Delayed diagnosis due to lack of awareness among healthcare professionals
- Frequent misdiagnosis, leading to unnecessary treatments
- Limited research funding, affects the development of new treatments
Rare Disease Day raises awareness of TN, ensuring it gets the recognition and research funding it deserves.
Sources:
National Institutes of Health
Rare Disease Day Official Website
How Rare Disease Day Supports the TN Community
Increasing Awareness
Greater awareness helps doctors recognise TN sooner, reducing delays in diagnosis and improving patient outcomes.
Advocating for Research on Rare Disease Day 2025
Aligning with a global movement strengthens the case for more research funding, clinical trials, and better treatments.
Providing Community Support
Living with TN can feel isolating, but support is available. Regional Support Groups (RSGs) across the UK offer:
- Opportunities to connect with others facing similar challenges
- Guidance and advice from experienced members
- Meetings held on Zoom and in person
Find a meeting through the TN Diary: https://www.tna.org.uk/diary-of-events/
How to Get Involved
you can play a part in Rare Disease Day. Consider these ways to raise awareness:
- Share your story to help others understand TN
- Attend events to learn and connect with the community
- Support research by encouraging donations and advocacy
Raising awareness and funding research ensures that TN remains a priority in medical and policy discussions.
Final Thoughts on Rare Disease Day 2025
Trigeminal Neuralgia deserves greater attention, better treatments, and stronger community support. Rare Disease Day 2025 is an opportunity to make a difference. Aneeta Prem MBE
