Newborn Screening Society of the Philippines, Inc.

06/03/2026

The Philippines takes the spotlight in the launch of the GNNRD Asia-Pacific Webinar Series, featuring a case study on Maple Syrup Urine Disease (MSUD) presented by Nurse Jane Delfin of the Institute of Human Genetics–NIH Philippines. The session highlights the vital role of newborn screening and early care in improving outcomes for people living with MSUD.

𝗚𝗡𝗡𝗥𝗗 𝗔𝘀𝗶𝗮-𝗣𝗮𝗰𝗶𝗳𝗶𝗰 𝗪𝗲𝗯𝗶𝗻𝗮𝗿 𝘁𝗼 𝗹𝗮𝘂𝗻𝗰𝗵 𝘄𝗶𝘁𝗵 𝗮 𝗰𝗮𝘀𝗲 𝘀𝘁𝘂𝗱𝘆 𝗳𝗿𝗼𝗺 𝘁𝗵𝗲 𝗣𝗵𝗶𝗹𝗶𝗽𝗽𝗶𝗻𝗲𝘀

The Global Nursing Network for Rare Diseases Asia-Pacific Group is launching an exciting new webinar series, led by nursing leaders from across the region. Each session will spotlight rare disease practice within a different country, exploring local challenges, innovations and lessons that could inform care across the Asia-Pacific.

Join us next week as Jane Delfin, Nurse at the Center for Human Genetics Services, Institute of Human Genetics - NIH Philippines, presents a case study of Maple Syrup Urine Disease. Jane will explore the critical role of newborn screening and early, holistic care in shaping outcomes for people living with rare diseases across the region.

Although the webinars are aimed at members from the Asia-Pacific, all GNNRD members are welcome to attend and learn! Sign up for free to access the GNNRD webinar at https://www.gnnrd.org/join.

Source: https://www.linkedin.com/company/global-nursing-network-for-rare-diseases/

Newborn Screening Society of the Philippines, Inc.

03/03/2026

Although it is already March 4 here in the Philippines, it is still March 3 in many parts of the world, and we continue to stand in solidarity for World Birth Defects Day. 🌍

We partner with the rest of the globe in raising a collective voice for birth defects awareness.

Every year on March 3, World Birth Defects Day brings attention to congenital conditions that affect families worldwide. The 2026 theme, “Many Birth Defects, One Voice,” reminds us that while birth defects may be diverse, our commitment to awareness, research, prevention, and improved care is united.

Here in the Philippines, newborn screening remains a powerful tool in ensuring early detection and timely intervention, giving every Filipino child the best possible start in life.

Across time zones, we stand as one voice.
Because every journey matters.

27/02/2026

Equity for rare diseases means MORE OPPORTUNITIES than you can imagine.

Meet Prince, 12, from Pasig City. He is living with Congenital Adrenal Hyperplasia (CAH), a rare condition that, without newborn screening and confirmatory testing, could have gone undetected and become life-threatening.

Because he was screened at birth, Prince was diagnosed early and guided by medical professionals who helped him and his family understand and manage his condition. Today, he continues to grow, study, and play, with the right care and support behind him.

This is what more opportunities look like.

Opportunities to access timely diagnosis.
Opportunities to receive proper treatment and follow-up care.
Opportunities to go to school, play sports, and dream big.
Opportunities not just to survive but to thrive.

Rare diseases may affect not more than 1 in 20,000 individuals in the Philippines, but collectively, they impact millions worldwide. Most patients are children. Many families still face delayed diagnosis, limited treatment options, and barriers to care.

This 17th National Rare Disease Week (February 22–28, 2026), with the theme “More Than You Can Imagine,” you can help move the conversation forward:
💙 Share verified information about rare diseases
💙 Start conversations in your schools and workplaces
💙 Wear blue denim to show solidarity
💙 Raise your hand and tag National Rare Disease Week Philippines and Philippine Society for Orphan Disorders Incorporated

When awareness grows, policies strengthen.
When communities unite, systems improve.
When opportunities expand, children thrive.
Let’s imagine and build a Philippines where rare disease patients are fully seen, supported, and empowered.

Together, let’s create a future where no one is left behind, more than we can imagine.

26/02/2026

In celebration of the National Rare Disease Week, join us for an informative and timely discussion on rare diseases and newborn screening.

HEALTH UPDATES WEBINAR #275
Rare Disease: Safe ba ang Anak Ko?
Featuring insights on Maple Syrup Urine Disease (MSUD), Pompe Disease, and Osteogenesis Imperfecta

February 27, 2026 (Friday)
12:00 NN – 1:00 PM

Our featured speaker, Dr. Ebner Bon Maceda, Director of the Institute of Human Genetics, National Institutes of Health, UP Manila, will help us better understand these rare conditions, the importance of early detection, and how families can be supported through proper care and newborn screening.

Together, let’s raise awareness, promote early diagnosis, and strengthen support for individuals and families affected by rare diseases.

Register now: bit.ly/HealthUpdatesWebinar275

Let’s continue working toward equity, awareness, and hope for every Filipino family. 💙💛

25/02/2026

Equity for rare diseases means MORE COMMUNITY.

Meet Ziah, 7, from Rizal. She is living with 6-PTPS Deficiency, a rare condition detected through newborn screening.

Because she was screened at birth, Ziah was diagnosed early and closely monitored, helping prevent serious complications such as brain damage and repeated seizures. Today, she continues to grow and thrive with the support of her family and healthcare team.

Rare diseases are individually uncommon, but collectively they affect millions. In the Philippines, a disease is considered rare if it affects not more than 1 in 20,000 individuals, and most patients are children.

Behind every diagnosis is a family, a healthcare team, and a community working together.

This National Rare Disease Week (February 22–28, 2026), let’s build more community than you can imagine, where awareness leads to understanding, and understanding leads to action.

💙 Stand with Filipino families living with rare diseases.
💙 Support newborn screening.
💙 Be part of a stronger, more connected rare disease community.

24/02/2026

Equity for rare diseases means MORE HOPE.

Meet Dana, 17, from Batangas, Philippines. She is living with Phenylketonuria (PKU), one of the rare diseases included in the Philippine Newborn Screening panel.

Because of newborn screening, Dana was diagnosed early. With proper medical care, regular follow-ups, and support from healthcare providers and her family, she continues to grow, learn, and pursue her dreams, even sharing her music with the world.

Without early detection, PKU can lead to intellectual disability, behavioral problems, and poor growth. But through timely screening and lifelong care, children like Dana are given a chance at a healthier future.

This is why equity matters.
Equity means access to screening.
Equity means access to treatment and follow-up care.
Equity means no Filipino child is left behind.

This National Rare Disease Week, February 22–28, 2026, we stand with over 300 million people worldwide living with rare diseases.

RARE IS STRONG.
RARE IS MANY.
RARE IS PROUD.

Join us in raising awareness, sharing stories, and calling for more opportunities, more action, and more hope for the rare disease community. Be part of the movement:
✔ Wear blue denim
✔ Raise your hand for Rare
✔ Share this post
✔ Use the hashtags below:

22/02/2026

13/02/2026

We are inviting everyone to join this year's observance of National Rare Disease Week Philippines and Rare Disease Day on February 22-28, 2026

The Philippine Society for Orphan Disorders Incorporated, together with the University of the Philippines Manila Institute of Human Genetics - NIH, Newborn Screening Reference Center, Newborn Screening Centers, and Volunteer Youth Leaders for Health - Philippines, invites volunteers, advocates, organizations, and agencies to join the annual celebration of National Rare Disease Week (NRDW). In the Philippines, the last week of February is dedicated to people living with a .

On February 22-28, the country will be observing the 17th National Rare Disease Week with the theme, “More than You can Imagine.” Around the globe, there are more than 300 million people living with a rare disease and approximately 6000 types of rare conditions. By sharing their stories, promoting awareness, and supporting their cause, we uplift the rare disease community – a community that is diverse but united in purpose.

Together, we can create a brighter future for Filipinos living with a rare disease beyond what we can imagine.

Download NRDW 2026 campaign materials at https://bit.ly/NRDWmaterials

06/02/2026

Join us for 2026!

Happening on Rare Disease Day, 28 February 2026 at 7 pm. Join us by organizing a building facade illumination in your office, agency, or community landmark.

Dare to be RARE. Show that you CARE!

Pursuant to Presidential Proclamation 1989, signed in 2010, National Week (NRDW) highlights the concerns of the Filipino rare disease community. Held every last week of February, NRDW aims to raise awareness and public support for people living with rare diseases. The event also culminates with Rare Disease Day (February 28), a globally coordinated movement on rare diseases.

Learn more about this event through our information pack and download NRDW 2026 materials at http://bit.ly/NRDWmaterials

20/10/2025

Just a few drops of blood from your baby’s heel can help detect serious conditions early — giving your little one the healthiest start in life. 💗
Make sure to screen your baby shortly after 24 hours of life.

18/10/2025

Grab a copy of today’s Philippine Star! The 23rd National Newborn Screening Convention is featured in today’s issue.