Research Libre Study

I am privileged to share with you the strides we are making in supporting groundbreaking research into Trigeminal Neuralgia (TN). Our commitment to advancing the understanding and treatment of TN is unwavering, and the Libra Study stands as a testament to this dedication.

The Libra Study, a Phase II/III multicentre clinical trial approved by the Medicines and Healthcare Products Regulatory Agency (MHRA) and an ethics committee, is at the forefront of exploring the efficacy and safety of Basimglurant. This innovative medication, targeting the mGlu5 receptors, offers new hope in mitigating the neural overactivity and pain associated with TN, especially for those who have found little relief with existing treatments.

Understanding the importance of well-informed support and advocacy, we took the initiative to organise a comprehensive training session in London for all our helpline volunteers and regional support leaders. This training was meticulously designed to arm our team with the necessary knowledge to field questions about the trial and to assess its potential benefits for our members. Such informed dialogue is crucial in navigating the complexities of TN treatment options.

The trial itself is structured to rigorously assess Basimglurant’s potential, comprising an initial 8-week run-in phase for dosage adjustment, followed by a 12-week double-blind phase, and culminating in a 52-week open-label extension phase. This meticulous approach ensures a thorough evaluation of the treatment’s efficacy and safety.

Eligibility for the study is thoughtfully considered, extending to adults between 18 to 75 years diagnosed with primary or idiopathic TN. It underscores our aim to reach those most in need of new treatment avenues. The study’s reach, spanning across multiple countries, not only reflects its global impact but also TNA UK’s commitment to fostering international collaboration in TN research.

Moreover, the Libra Study emphasises patient support by covering all related travel and medical expenses, ensuring that participation is accessible to all eligible individuals. This approach is reflective of our broader ethos at TNA UK, where the well-being of our members is paramount.

The feedback from our community has been profoundly positive, with members expressing gratitude for the opportunity to participate in such pivotal research. One member’s words resonate deeply: “A big thank you to our lovely TN association for telling me about the trial. I feel like I can do something for all my fellow sufferers. I am going into the trial full of optimism and hope.” This sentiment captures why we champion such research: to offer hope and make a tangible difference in the lives of those affected by TN.

In closing, the support of our members and the wider community is invaluable as we continue to back significant research endeavours like the Libra Study. It is through these collective efforts that we move closer to uncovering new treatments and ultimately improving the quality of life for those living with Trigeminal Neuralgia.

 

Rare Disease Day

The Significance of Rare Disease Day in Elevating Trigeminal Neuralgia Awareness

Introduction to Rare Disease Day and Trigeminal Neuralgia

Rare Disease Day, commemorated on the 29th of February, is more than a calendar event; it’s a global movement towards equality in health care and societal support for individuals with rare diseases, including the profoundly impactful condition known as Trigeminal Neuralgia (TN). This day aims to amplify the voices of the rare disease community, advocating for medical advancements, policy changes, and increased awareness. Trigeminal Neuralgia, with its debilitating facial pain, stands as a testament to the unseen struggles endured by those with rare conditions. By spotlighting TN, we delve into a world where pain transcends the physical, touching the very essence of human resilience.

Understanding Trigeminal Neuralgia (TN)

At its core, Trigeminal Neuralgia is a chronic pain disorder that affects the trigeminal nerve, one of the most extensive nerves in the human head. The condition is characterized by intense, stabbing pain on one side of the face, often triggered by seemingly innocuous actions such as eating, speaking, or even a gentle breeze. The unpredictable nature of TN attacks not only causes physical suffering but also imposes a heavy emotional and psychological burden on those affected.

The Role of the Trigeminal Neuralgia Association (TNA)

In the face of such adversity, the Trigeminal Neuralgia Association (TNA) emerges as a beacon of hope. Established to navigate the complexities of TN, the TNA provides essential services ranging from helpline support to fostering a robust community network. Through these efforts, the TNA not only offers a lifeline to individuals grappling with TN but also spearheads initiatives to advance research and advocacy, paving the way towards innovative treatments and, ultimately, a cure.

Helpline and E-Helpline Support: A Lifeline for Sufferers

The cornerstone of TNA’s support system is its helpline and e-helpline services. Operated by compassionate individuals, many of whom have personal experiences with TN, these helplines offer immediate support, advice, and a listening ear to those in need. The impact of these services cannot be overstated; for many, they represent the first step towards finding effective management strategies and, importantly, a community that understands their struggle.

Community and Regional Support: Fostering Connection and Understanding

Beyond the helplines, TNA’s commitment to building a supportive community is evident in its regional support groups and online forums. These platforms allow individuals affected by TN to share their stories, exchange information, and find solace in the shared experience of living with this rare condition. The power of community, as cultivated by TNA, provides a foundation of emotional support that is vital for coping with TN.

Advancing Research and Awareness

TNA’s mission extends into the realms of research and awareness. By funding studies into the causes, treatments, and potential cures for TN, TNA is at the forefront of scientific efforts to combat this condition. Awareness campaigns, timed to coincide with Rare Disease Day and other significant dates, play a crucial role in educating the public and healthcare professionals about TN, ultimately fostering a more informed and empathetic society.

Conclusion: Uniting for a Brighter Future

As we mark Rare Disease Day, let us renew our commitment to supporting the TN community and the broader rare disease movement. The path ahead is fraught with challenges, but through collective action, advocacy, and research, we can aspire to a future where Trigeminal Neuralgia no longer casts a shadow over the lives of those affected. Together, we can turn the tide against TN, illuminating the way forward with hope, understanding, and unwavering support.

varies, but studies have suggested that it affects approximately 4 to 13 people per 100,000 annually. It’s important to note that this estimate might vary due to new research and differences in diagnostic criteria.

Rare Disease DayThe Significance of Rare Disease Day in Elevating Trigeminal Neuralgia Awareness Introduction to Rare Disease Day and Trigeminal Neuralgia is an international awareness campaign that takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on the lives of patients. Trigeminal Neuralgia, due to its rarity, would be among the conditions highlighted to improve knowledge and encourage research and policy initiatives aimed at addressing the challenges faced by those living with rare diseases.