#CareForRarePH: How can you be part of NRDW 2025?

SAN JUAN, M.M. – The Philippine Society for Orphan Disorders, Incorporated (PSOD), together with the UP Manila Institute of Human Genetics, Newborn Screening Reference Center, and Volunteer Youth Leaders for Health – Philippines, invites volunteers, advocates, organizations, and agencies to join the annual celebration of National Rare Disease Week (NRDW) on February 22-28, 2025. In the Philippines, the last week of February is dedicated to people living with a rare disease. 

 

 

On February 22-28, the country will be observing the 16th 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.  

What is a Rare Disease?

Rare diseases refer to a group of life-threatening or chronically debilitating diseases that are of such low prevalence that special combined efforts are needed to address them. In the Philippines, a disease is considered rare if it affects not more than 1 in every 20,000 individuals.

 

What is National Rare Disease Week?

The last week of February was declared as the “National Rare Disease Week” in the Philippines on February 8, 2010, through Presidential Proclamation No. 1989. The week-long celebration aims to address the “need to conduct a national information campaign in order to create awareness among health professionals about the nature and medical management of rare diseases; and instill awareness among the public about rare diseases to generate full support for the special needs of children affected by rare disease from both public and private sectors.”

 

What is Rare Disease Day?

Rare Disease Day is held every last day of February. During leap years, it is held on February 29 – the rarest day of all. Rare Disease Day was first launched by the European Organization for Rare Diseases (EURORDIS) and its Council of National Alliances in 2008 with 18 participating countries. The political momentum resulting from the Day has also served for advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries. Even though the campaign started as a European event, it has transformed into a global event. For more info, visit rarediseaseday.org.

 

How can you be part of NRDW 2025?

  • Volunteer and Partner Registration. In preparation for the upcoming observance of National Rare Disease Week and World Birth Defects Day 2025 (March 3), the Philippine Society for Orphan Disorders (Civil Society/Patient Organization), Volunteer Youth Leaders for Health – Philippines (Youth), and the Institute of Human Genetics-National Institutes of Health – UP Manila (Government/Academe) jointly opened the call for partner youth organizations for these health observances in the Philippines. Interested individuals and groups may register at https://bit/ly/NRDW2025call.

 

  • On the Ground Campaign:
    • Print It and Shout it out! Print banners and posters and display it in your office bulletin boards, hallways, and other ‘high-traffic’ areas so more people will know about NRDW.
    • Wear it! Schedule a blue jeans day on Rare Disease Day (February 28). You can also make blue denim ribbons out of your old denims and wear them during the campaign week. Share your denim ribbons with your officemates, members of your organization, or friends.

 

  • Online Campaign:
    • Post it! Post about NRDW on your website. Watch out for the campaign materials to be uploaded to our campaign drive and social media platforms.
    • Raise your hands for Rare. Take a photo, selfie, or groupie with your hand/s raised. Raising your hands for rare means you are adding your voice to the call for better support for Filipinos afflicted with rare diseases.
    • Use the Official Campaign Hashtags #CareForRarePH #NRDW2025 and #RareDisease
    • Tag us. Tag our official pages @PSODcareforrare and @RareDiseaseWeek on your social media posts when you upload your activity photos. Don’t forget to use our campaign hashtags.
    • Facebook Campaign. The goal is to gain more than 1000+ likes. We also invite everyone to share our campaign posts and updates.
    • Update your Facebook Cover Photo and Use the campaign frame in your DP.
    • Join the Tiktok Campaign. Share and post reels about NRDW and rare diseases. Watch out for our campaign videos and mechanics in our official channel @PSODcareforrare

 

  • Light for Rare.The Light Up for Rare Campaign is a global invitation to illuminate a building or landmark on the evening of Rare Disease Day (February 28, 7:00 PM). Through this activity, we will be able to participate in the chain of lights across the world.

To download the campaign briefer and other campaign materials, visit https://bit.ly/NRDW2025materials.

Together, we can bring awareness to diseases, stories, and communities beyond what we can imagine.


About the Philippine Society for Orphan Disorders (PSOD)

The Philippine Society for Orphan Disorders (PSOD) is a non-profit organization whose mission is to uphold the primary concerns and welfare of individuals with rare disorders in the Philippines by directly addressing, supporting, and protecting their health and general well-being. PSOD is dedicated to being the central network for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for individuals with orphan or rare disorders.

To learn more about PSOD, visit http://www.psod.org.ph.