In a significant step towards raising awareness and providing essential support for Neurofibromatosis Type 1 (NF1) patients, NF Club Thailand is hosting 'Beyond the Fighter', an awareness and fundraising campaign launching on 27 March 2025 at the Renaissance Hotel Bangkok. The event is supported by strategic partners, including the Thai Rare Disease Foundation (TRDF), the Medical Genetics and Genomics Association (MGGA), the British Chamber of Commerce Thailand, the Thai-Swedish Chamber of Commerce, the British Embassy, the Embassy of Sweden, and the private sector.
This campaign seeks to empower patients and families affected by NF1?a rare and often misunderstood non-communicable disease?by highlighting their challenges and improving access to essential medical care. This initiative focuses on addressing the barriers and unmet needs faced by NF1 patients, working towards improving their access to treatment and quality of life. Co-chairing the campaign is Prof. Vorasuk Shotelersuk, M.D., Director of the Centre of Excellence for Medical Genomics at the Faculty of Medicine, Chulalongkorn University, and NF Club consultant, who has emphasised the urgent need for increased awareness and financial support for individuals living with NF1.
NF1 is a rare genetic disorder affecting approximately 1 in 3,000 individuals, yet awareness remains low in Thailand. NF1 is caused by both genetic inheritance and spontaneous mutation, with 50% of cases inherited and 50% occurring through random genetic change. Despite its prevalent symptoms, NF1 is often misunderstood, leaving patients to contend with issues such as social stigma, discrimination, misdiagnosis, and limited access to medical care, all contributing to physical and emotional distress. The 'Beyond the Fighter' campaign aims to promote understanding and enable participants to gain a clearer understanding of NF1 while offering opportunities for attendees and the public to donate to individuals affected by this rare disease.
Total proceeds from the campaign will directly contribute to NF1 patients' treatment, from diagnosis to care. This includes subsidising treatment programmes, collaborating with health institutions to provide comprehensive care, and offering patients better access to essential medical assistance and life-changing treatments, enabling them to lead more dignified and integrated lives within their communities while advocating for an equitable society.
Professor Thanyachai Sura M.D., President of MGGA, stated, "NF1 patients encounter numerous obstacles in their daily lives?physically, psychologically, and socially. This is an opportunity to contribute to a more inclusive society and make a real difference for NF1 patients, whose lives have been greatly affected by limited opportunities and the challenges posed by their condition. By coming together with our partners, we aim to build better understanding and compassion for those living with this rare condition while addressing their unmet needs. Every contribution helps bring us closer to a future where NF1 patients receive the care and support they require, ensuring more secure and inclusive lives."
"The Rare Disease Working Group is committed to enhancing the criteria for evaluating treatments included in the national benefits package, particularly for rare diseases such as NF1. Given the high cost of treatment, traditional cost-effectiveness assessments may not adequately address the needs of these patients. Our goal is to assist rare disease patients in accessing appropriate treatments and to reduce the risk of financial insolvency due to their illness. By reconsidering the evaluation framework to include the overall budget impact, rather than focusing solely on the cost per patient, we aim to improve access to these essential treatments for those who require them most," stated Associate Professor Cherdchai Nopmaneejumruslers, M.D., President of the Rare Disease Working Group.
By supporting this campaign, individuals, organisations, and communities have opportunity to advocate for and enhance the lives of NF1 patients. Donations are open and are 100% tax-deductible.
To contribute to this vital cause, donations can be made to Kasikorn Bank, account number 623-2-05906-9 (The S.K. Building Foundation, King Chulalongkorn Memorial Hospital, under the Royal Patronage). For tax deduction purposes, please send a copy of your donation receipt to beyondthefighter.nf1@gmail.com.
For more information about NF Club Thailand and Beyond the Fighter campaign, please visit facebook.com/barntawsaenpom.
In a significant step towards raising awareness and providing essential support for Neurofibromatosis Type 1 (NF1) patients, NF Club Thailand is hosting 'Beyond the Fighter', an awareness and fundraising campaign launching on 27 March 2025 at the Renaissance Hotel Bangkok. The event is supported by strategic partners, including the Thai Rare Disease Foundation (TRDF), the Medical Genetics and Genomics Association (MGGA), the British Chamber of Commerce Thailand, the Thai-Swedish Chamber of Commerce, the British Embassy, the Embassy of Sweden, and the private sector.
This campaign seeks to empower patients and families affected by NF1?a rare and often misunderstood non-communicable disease?by highlighting their challenges and improving access to essential medical care. This initiative focuses on addressing the barriers and unmet needs faced by NF1 patients, working towards improving their access to treatment and quality of life. Co-chairing the campaign is Prof. Vorasuk Shotelersuk, M.D., Director of the Centre of Excellence for Medical Genomics at the Faculty of Medicine, Chulalongkorn University, and NF Club consultant, who has emphasised the urgent need for increased awareness and financial support for individuals living with NF1.
NF1 is a rare genetic disorder affecting approximately 1 in 3,000 individuals, yet awareness remains low in Thailand. NF1 is caused by both genetic inheritance and spontaneous mutation, with 50% of cases inherited and 50% occurring through random genetic change. Despite its prevalent symptoms, NF1 is often misunderstood, leaving patients to contend with issues such as social stigma, discrimination, misdiagnosis, and limited access to medical care, all contributing to physical and emotional distress. The 'Beyond the Fighter' campaign aims to promote understanding and enable participants to gain a clearer understanding of NF1 while offering opportunities for attendees and the public to donate to individuals affected by this rare disease.
Total proceeds from the campaign will directly contribute to NF1 patients' treatment, from diagnosis to care. This includes subsidising treatment programmes, collaborating with health institutions to provide comprehensive care, and offering patients better access to essential medical assistance and life-changing treatments, enabling them to lead more dignified and integrated lives within their communities while advocating for an equitable society.
Professor Thanyachai Sura M.D., President of MGGA, stated, "NF1 patients encounter numerous obstacles in their daily lives?physically, psychologically, and socially. This is an opportunity to contribute to a more inclusive society and make a real difference for NF1 patients, whose lives have been greatly affected by limited opportunities and the challenges posed by their condition. By coming together with our partners, we aim to build better understanding and compassion for those living with this rare condition while addressing their unmet needs. Every contribution helps bring us closer to a future where NF1 patients receive the care and support they require, ensuring more secure and inclusive lives."
"The Rare Disease Working Group is committed to enhancing the criteria for evaluating treatments included in the national benefits package, particularly for rare diseases such as NF1. Given the high cost of treatment, traditional cost-effectiveness assessments may not adequately address the needs of these patients. Our goal is to assist rare disease patients in accessing appropriate treatments and to reduce the risk of financial insolvency due to their illness. By reconsidering the evaluation framework to include the overall budget impact, rather than focusing solely on the cost per patient, we aim to improve access to these essential treatments for those who require them most," stated Associate Professor Cherdchai Nopmaneejumruslers, M.D., President of the Rare Disease Working Group.
By supporting this campaign, individuals, organisations, and communities have opportunity to advocate for and enhance the lives of NF1 patients. Donations are open and are 100% tax-deductible.
To contribute to this vital cause, donations can be made to Kasikorn Bank, account number 623-2-05906-9 (The S.K. Building Foundation, King Chulalongkorn Memorial Hospital, under the Royal Patronage). For tax deduction purposes, please send a copy of your donation receipt to beyondthefighter.nf1@gmail.com.