Maria Katrina Paras

Article (news)

Rare Disease Week Philippines 2026

<p>In the hallowed halls of medical school, students are often taught a simple proverb: <strong>“When you hear hoofbeats, think horses, not zebras.”</strong> It is a lesson in probability to look for the common, the expected, the routine. But for over 400 million people globally, and thousands of Filipinos, life isn&#x27;t lived in the safety of the herd. They are the zebras, living with conditions so rare they are often invisible to the very systems meant to save them.</p><div><br/></div><div><span class="fr-img-caption fr-fic fr-dib fr-rounded" style="width:700px;display:block" width="700"><span class="fr-img-wrap"><img src="https://od2-image-api.abs-cbn.com/prod/editorImage/1774582122120AstraZeneca Rare Disease Week.jpg" style="width:700px;display:block;height:auto" class="fr-fic fr-dib fr-rounded" width="700"/><span class="fr-inner">(L-R: Dr. Donna Sarrosa, pediatric dermatologist; Dr. Loudella Castillo, pediatric neurologist; Cathy Enteria, NF1 patient caregiver and mother; Hellen Driz, Lupus advocate; Araceli Lanorio, NF1 advocate; Lotis Ramin, country president, AstraZeneca Philippines; Dr. Melanie Alcausin, UP-NIH; and Jeremie Soriano, PSOD member). Healthcare experts and patient advocates gathered in a roundtable discussion tackling the urgent needs of people living with rare disease.</span></span></span></div><div><br/></div><p>In observance of <strong>Rare Disease Week 2026</strong>, the silence surrounding these “invisible” lives was broken. <strong>AstraZeneca Philippines</strong>, alongside a powerhouse collective of medical experts, government representatives, and patient advocates, convened for an Agham Kapihan forum titled <strong>“More Than We Can Imagine: Amplifying Voices to Strengthen Equitable Rare Disease Care in the Philippines.”</strong></p><div><br/></div><div><strong>The weight of the invisible</strong></div><p>Rare disease is a bit of a linguistic paradox. Individually, these conditions are scarce—defined in the Philippines as affecting one in 20,000. Yet, collectively, they represent a population larger than those affected by cancer and AIDS combined.</p><p>Rare disease is a bit of a linguistic paradox. Individually, these conditions are scarce—defined in the Philippines as affecting one in 20,000. Yet, collectively, they represent a population larger than those affected by cancer and AIDS combined.</p><p>“Individually, the number is low. But when you combine all these rare diseases, that&#x27;s a significant number. That number translates to people, and people to families that are impacted by these conditions,” noted <strong>Dr. Melanie Alcausin </strong>of the University of the Philippines–National Institutes of Health. </p><div><br/></div><div><span class="fr-img-caption fr-fic fr-dib fr-rounded" style="width:700px;display:block" width="700"><span class="fr-img-wrap"><img src="https://od2-image-api.abs-cbn.com/prod/editorImage/1774582770070Dr Melanie Alcausin.jpg" style="width:700px" class="fr-fic fr-dib fr-rounded" width="700"/><span class="fr-inner">Dr. Melanie Alcausin</span></span></span></div><p>The forum highlighted that the battle against rare diseases is fought on three distinct fronts: the diagnostic journey, the financial burden, and the emotional vacuum.</p><p>For patients like<strong> Araceli Tenorio</strong>, a Neurofibromatosis 1 advocate from <strong>NF friends</strong>, the diagnosis wasn&#x27;t only a medical label but also a thief of certainty. At 16, a dream of becoming a physician was sidelined by the terrifying prognosis of tumors that would eventually cover her face and body. </p><p>“<em>Sinabihan po kami ng doktor nu’n na </em>[I will] be covered by tumors all over the body, including the face. So imagine the fear and the stigma of a 16-year-old young lady—who wanted to be also a physician at that time—<em>na parang, anong nangyayari</em>? <em>Bakit ako ‘yung nagkaroon?</em>” Araceli shared, reflecting on the isolation of being the only “zebra” she knew until she saw a fellow patient on screen years later.</p><div><br/></div><div><span class="fr-img-caption fr-fic fr-dib fr-rounded" style="width:700px;display:block" width="700"><span class="fr-img-wrap"><img src="https://od2-image-api.abs-cbn.com/prod/editorImage/1774582867412Araceli Lanorio (NF Friends).jpg" style="width:700px" class="fr-fic fr-dib fr-rounded" width="700"/><span class="fr-inner">Araceli Lanorio (NF Friends)</span></span></span></div><p>Following a similarly winding path, <strong>Hellen Driz</strong>, Head of Operations for <strong>Hope For Lupus</strong>, recounted the exhaustion of being misdiagnosed with cancer before finding the truth. “I am in school [to fetch my kids] pero sobra akong mahina. Humiga pa ako sa bleachers nun at pagkahatid ko sa mga anak ko, wala akong energy,” she recalled. </p><p>In her story, she faces a haunting reality for many: the “diagnostic odyssey” takes years of physical, emotional, and financial depletion. “Ang unang finding sa akin, I have cancer, but after that, saka pa lang ako na-diagnose with lupus.” Four years later, with medical support and a strong circle around her, Hellen found steadier ground.</p><div><br/></div><div><span class="fr-img-caption fr-fic fr-dib fr-rounded" style="width:700px;display:block" width="700"><span class="fr-img-wrap"><img src="https://od2-image-api.abs-cbn.com/prod/editorImage/1774582989793Hellen Driz Hope for Lupus.jpg" style="width:700px" class="fr-fic fr-dib fr-rounded" width="700"/><span class="fr-inner">Hellen Driz of Hope for Lupus</span></span></span></div><p><strong>Jeremie Soriano</strong>, representing<strong> Acromegaly Philippines</strong> under the <strong>Philippine Society for Orphan Disorders (PSOD)</strong>, knows the value of a keen medical eye. Diagnosed with acromegaly, a condition where a pituitary tumor causes excessive growth hormone, leading to physical enlargement, he was “lucky” to be spotted early by a doctor who noticed his unusually large hands.</p><p>“In my experience, I am lucky that I was diagnosed at an earlier stage. For me, it’s really the doctors who can help us to determine that a patient is having a rare disease,” he reflected.</p><p>In 2021, he began experiencing symptoms that resembled Type 2 diabetes. Hyperglycemia led to hospital admission, where routine tests revealed something more. A doctor noticed subtle physical features—what he described as “acral.” A CT scan followed, and there came the result.</p><div><br/></div><div><span class="fr-img-caption fr-fic fr-dib fr-rounded" style="width:700px;display:block" width="700"><span class="fr-img-wrap"><img src="https://od2-image-api.abs-cbn.com/prod/editorImage/1774583089352Rare Disease Panel.jpg" style="width:700px" class="fr-fic fr-dib fr-rounded" width="700"/><span class="fr-inner">The Rare Disease panel</span></span></span></div><p>“My early diagnosis leads me to a better prognosis. So, we really advocate that an early diagnosis can lead to a better prognosis,” Jeremie added. </p><p>Even with diagnosis, the battle does not end. Access to treatment remains another steep climb. In Jeremie’s words, there are orphan drugs and medications that are not available in the country. </p><p>The financial weight of rare disease care is relentless. Blood tests alone can cost upwards of Php 10,000 monthly for newly diagnosed patients. Monitoring may eventually space out to every six months, but only if stability is achieved. Until then, laboratories, imaging, consultations, and medications stack into an exhausting ledger. And for many families, there is no financial safety net large enough to absorb it all.</p><div><br/></div><div><strong>Innovation as an act of empathy</strong></div><p>The forum served as a clarion call for a shift from passive observation to active intervention. At the heart of this movement is a push for equitable care, the idea that the rarity of a condition should not dictate the quality of its cure.</p><p><strong>Lotis Ramin</strong>, <strong>Country President of AstraZeneca Philippines</strong>, emphasized that clinical breakthroughs are only half the battle. “At AstraZeneca, we are driven by innovation to change what it means to live with a rare disease. We are committed to delivering life-changing treatment while ensuring that the lived experiences of patients guide our every decision,” she stated.</p><p><strong>“Our mission is to push the boundaries of science and to change what it means to live with a rare disease. Built on a legacy of pioneering science, we at AstraZeneca commit to follow the science to deliver life-changing innovation and medicines,” </strong>added Lotis.</p><div><br/></div><div><img src="https://od2-image-api.abs-cbn.com/prod/editorImage/1774583171295Rare Disease Week PH.jpg" style="width:700px" class="fr-fic fr-dib fr-rounded"/></div><div><br/></div><p>This sentiment was echoed by <strong>Dr. Loudella Castillo</strong>, a child neurologist and neuromuscular specialist, who argued that no condition should be left untreated. She pressed, “As doctors, we guide patients and their families in terms of supportive care and treatment, while anticipating complications and monitoring their symptoms.”</p><p>In the absence of a “silver bullet” cure, the medical community&#x27;s role is to provide a scaffold of supportive care, monitoring, and most importantly, understanding.</p><div><br/></div><div><span class="fr-img-caption fr-fic fr-dib fr-rounded" style="width:700px;display:block" width="700"><span class="fr-img-wrap"><img src="https://od2-image-api.abs-cbn.com/prod/editorImage/1774583253633Dr Loudella Castillo.jpg" style="width:700px" class="fr-fic fr-dib fr-rounded" width="700"/><span class="fr-inner">Dr. Loudella Castillo</span></span></span></div><p>“Helping people with chronic illness is not pity—it is actually understanding,” stated Hellen.</p><p>When she was first diagnosed, family support anchored her. There was a time she could not walk independently and her weight dropped drastically. From assisting her to the restroom to accompanying her to consultations, her family became her physical backbone.</p><p>But she is painfully aware that not all patients receive the same understanding at home.</p><p>“Speaking from my own experience, aside from the physical burden, I also faced emotional and financial challenges. Good thing I found a support group that was there for me,” she stressed.</p><p>Support groups today operate online, accessible even without face-to-face meetings. In the vantage point of a newly diagnosed patient, the turnover from despair to resilience often happens the moment they realize they are not alone. </p><p>“So for [those who encounter] a newly diagnosed patient, please help them emotionally. Tulungan natin sila mentally. It’s not that ‘Kaya mo yan.’ Hindi, kung ‘di tanggapin natin na ‘yung mga nararamdaman nila at ‘yung mga sinasabi nila ay totoo,” Hellen further remarked.</p><div><br/></div><div><strong>A path toward the light</strong></div><p>The conversation at Agham Kapihan was both about shared struggles and systemic solutions. </p><p>In the traditionally siloed world of specialized medicine, the presence of a dermatologist at a rare disease forum might seem unconventional. However,<strong> Dr. Donna Sarrosa</strong>, a pediatric dermatologist and moderator of the session, clarified the vital role of the specialty. </p><p>Representing the <strong>Philippine Dermatological Society and the Pediatric Dermatological Society of the Philippines</strong>, Dr. Sarrosa mentioned that they are currently spearheading an initiative to unify dermatological patients under a formal rare disease group. </p><p>The Philippine healthcare landscape is at a turning point, with stakeholders calling for the full implementation of <strong>Republic Act No. 10747 (the Rare Diseases Act)</strong>. It aims to improve access to comprehensive medical care and establish a framework for research and assistance. </p><div><br/></div><div><a href="https://metro.style/wellness/2026/3/24/meaningful-ways-to-spend-holy-week-1600" rel="noopener noreferrer" target="_blank">READ: Restorative Ways to Spend the Holy Week Break</a></div><div><br/></div><p>Yet stakeholders at the forum emphasized that legislation is only as powerful as its implementation. A recently filed Senate Bill seeks to strengthen the Act by expanding access to medical care, specialized healthcare products, and timely information, all resources that can dramatically change outcomes for patients often racing against time. </p><p>Earlier diagnosis, better care coordination, clearer referral pathways are not abstract goals but urgent necessities echoed across the room.</p><p>When asked what systemic change would have made the biggest difference in her journey, Araceli answered with conviction: full implementation. “If ma-implement talaga sa current healthcare system, it could really help NL1 patients and the rare disease community to really have their own voices to be heard. </p><p>“We all know that rare diseases are very few in numbers, but of course, our stories, our voices—<em>dapat hindi rin maging </em>rare. ‘<em>Yun ang gusto namin maiparating na pwedeng kulang kami sa numero, pero</em> make it a point <em>na ‘yung boses namin ay hindi magkulang</em>,” she put it.</p><p>The advocacy extends beyond awareness. It includes pushing for sustained access to medication. After all, rare disease care cannot be episodic, it must be sustained.</p>

<p>In observance of Rare Disease Week 2026, the silence surrounding these “invisible” lives was broken.</p>

In observance of Rare Disease Week 2026, the silence surrounding these “invisible” lives was broken.

Patients and Health Experts Shed Light on Rare Disease Care in the Philippines

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Patients and Health Experts Shed Light on Rare Disease Care in the Philippines

Leigh Sofia Lazo

Published March 27, 2026 11:50 AM PHT

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Updated March 27, 2026 11:57 AM PHT

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Rare Disease Week 2026

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