Patients, medical experts, and advocates hold out their green and blue painted palms after marking the NF Awareness Wall to symbolize unity, and their shared commitment to furthering the visibility and support for neurofibromatosis in the Philippines.
MANILA, Philippines — Health experts, patients, and rare disease advocates came together to mark World Neurofibromatosis (NF) Awareness Month, calling for earlier diagnosis, stronger health education, and better support systems for Filipinos living with Neurofibromatosis type 1 (NF1)—a genetic condition that affects 1 in every 3,000 people worldwide1.
“It’s not just about awareness, but about sharing our journeys, which are filled with fear, uncertainty, and pain, but also courage, compassion, and hope,” said Araceli Lanorio, patient leader of Neurofibromatosis Friends. “We are more than our diagnosis. We are warriors, advocates, and survivors. Together, we move forward,” she added. “We have a strong community,” Araceli emphasized, highlighting the importance of support and unity.
Understanding Neurofibromatosis
Neurologist Dr. Loudella Castillo, of the Philippine Neurological Association – Rare Disease Interest Group, delivers a keynote address, providing crucial information and addressing common questions about Neurofibromatosis
Neurofibromatosis type 1 is a genetic condition caused by an altered chromosome 171, either passed down by a parent or occurring spontaneously in conception.2 NF1 is a complex, heterogeneous disease that manifests differently per patient. Most common symptoms include light brown spots on the skin, while some present with the rare and complicated plexiform neurofibroma that develops deep inside the body, causing pain and further body deformities.
“The challenge with NF1 is that it doesn’t always look the same in every person,” explained Dr. Loudella Castillo, neurologist and member of the Philippine Neurological Association – Rare Disease Interest Group. “That’s why awareness is key, not just among doctors, but in schools, communities, and families. The earlier we detect it, the better we can support patients throughout their lives.”
Currently, there is no definitive cure for NF1, although in recent years, researchers have found a way to minimize the growth of plexiform neurofibromas in children aged three and above.6
Philippine Progress in NF1 Treatment
Selumetinib (Koselugo) has been approved in the Philippines for the treatment of symptomatic, inoperable plexiform neurofibromas (PN) in children and teens with Neurofibromatosis type 1 (NF1).7
The recent approval made by the Philippine Food and Drug Administration was based on positive results from its clinical trials, which showed a meaningful reduction in tumor size in most pediatric patients treated with selumetinib.4
Results published in The New England Journal of Medicine showed that Koselugo, in its SPRINT Stratum 1 Phase II trial, had an objective response rate of 66% in pediatric patients with PNs in NF1 who took the medicine as a twice-daily oral monotherapy.4
“Koselugo brings hope to children and adolescents whose lives are affected by the growth of painful and debilitating tumors caused by NF1,” AstraZeneca Philippines Country President Lotis Ramin said.
She added, “AstraZeneca takes pride in introducing this innovation to the NF1 community, demonstrating our strong commitment to bringing life-changing treatments to those who will benefit the most: Filipino patients and their families. We will collaborate with the medical community, private sector, patient groups, and government to ensure earlier diagnosis and equitable access to care for all Filipinos with rare diseases.
Together, we make NF seen
(From second to left) Dr. Loudella Castillo, neurologist and member of the Philippine Neurological Association – Rare Disease Interest Group; Araceli Lanorio, patient leader of Neurofibromatosis Friends; Jorge Abril, NF1 patient advocate; Dr. Raul Tuquero, PhilHealth Branch Manager NCR South; Sarah Gonzalez, NF2 patient advocate; and Dr. Cyril Tolosa, Medical Affairs Director of AstraZeneca Philippines participate in an open fireside chat on how to make neurofibromatosis care in the Philippines more inclusive, responsive, and grounded in real patient experiences.
For many patients, being seen and understood is a vital part of living with NF.
“One of the toughest parts of living with NF2 is dealing with the invisible pain that others often don’t see, and that’s why advocating for earlier diagnoses and better support is so vital to me,” said Sarah Gonzalez, a Neurofibromatosis type 2 (NF2) patient.
With her handprint on the wall, Sarah Gonzales, an NF2 advocate, leaves her mark to remind others that they are not alone in their journey with Neurofibromatosis.
NF2, a rarer form of the disease, is caused by an alteration in the NF2 gene found on chromosome 223, and accounts for about 3% of all diagnosed neurofibromatosis cases.3 Though distinct from NF1, it shares the challenge of low awareness and delayed diagnosis.
For others like Jorge Abril, who was diagnosed with NF1, the journey has been as emotional as it is medical.
“It was tough being bullied for my appearance growing up with NF1. But when my classmates learned about my condition, it changed everything—even my bully became a friend,” Jorge Abril, NF1 patient advocate, recalled
As stories like Jorge’s and Sarah’s show, raising awareness is not just a medical issue—it’s deeply personal. This year’s event aimed to make that message heard.
A Community-Led Movement
As green and blue are the colors of Neurofibromatosis awareness, patients, advocates, and health experts display their painted hands, raising their voices for visibility and hope on World NF Awareness Month.
Supported by AstraZeneca Philippines, the Philippine Neurological Association (PNA) – Rare Disease Special Interest Group, PhilHealth, Neurofibromatosis & Friends, and the Philippine Alliance of Patient Organizations, the forum gathered patients, families, healthcare professionals, advocacy leaders, and policymakers for a shared conversation on awareness, inclusion, and action.
“NF presents a significant challenge not only for those diagnosed, but across society,” said Dr. Cyril Tolosa, Medical Affairs Director at AstraZeneca Philippines. “We must work together—patients, experts, advocates, and policymakers—to address both the visible and invisible struggles of this condition. Through collaboration, early detection programs, and new research pathways, we can push for more equitable care for all Filipinos living with NF.”
Turning Awareness Into Action
This World Neurofibromatosis Month, organizers are calling on Filipinos to go beyond awareness and take part in building better systems for rare disease care. From early detection and proper referrals to emotional support and access to treatment, each step brings hope to families affected by NF.
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About AstraZeneca Philippines
AstraZeneca (LSE/STO/Nasdaq: AZ) is a global, science-led biopharmaceutical company dedicated to advancing care in Oncology, Rare Diseases, and BioPharmaceuticals, including Cardiovascular, Renal & Metabolism, and Respiratory & Immunology. Operating in over 100 countries, its innovative medicines benefit millions of patients worldwide. Learn more at astrazeneca.com.
