What is National Rare Disease Week? The last week of February (February 22-28/29) 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.” National Rare Disease Week culminates with the observance of Rare Disease Day.
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.
Messages
Calendar of Activities
| Date | Activity | Venue | Lead Agency |
|---|---|---|---|
| February 22-28 | Week-long Campaign | Nationwide and Online | PSOD, VYLH, IHG-NIH, UP Manila, Partner Agencies and Volunteers |
| February 23-24 | National Rare Disease Forum and Workshop (by invitation) | City of Manila | Department of Health |
| February 24 | National Rare Disease Technical Working Group Meeting | City of Manila | Department of Health |
| February 25 | InkluNasyon Webinar – Rare Diseases: Raising Awareness and Consciousness featuring: Dr. Ebner Bon Maceda, Director, IHG-NIH, UP Manila and Ms. Joan Alegre, Mother of Children with Hunter Syndrome | Online via Facebook Live | InluNasyon Now Na! (jointly organized by Philippine Coalition on the UN CRPD (PCUNCRPD), E-Net Philippines, NORFIL Foundation, Inc., LAPIS SeeSaw Channel) |
| February 26 |
More than We Can Imagine: Amplifying Voices to Strengthen Equitable Rare Disease Care in the Philippines (by invitation)
|
EDSA Shangri-La Hotel | AstraZeneca Philippines |
| February 27 | Wear that You Care (Jeans for Genes Day) | Nationwide | Coordinated by PSOD |
| February 27, 12:00NN | Health Updates Webinar #275: Rare Disease: Safe ba ang anak ko? Maple Syrup Urine Disease, Pompe, Osteogenesis Imperfecta Resource Person: Dr. Ebner Bon Maceda, Director, IHG-NIH, UP Manila | Online via Zoom Register (Watch) |
Health Updates/University of the Philippines/ TVUP |
| February 27, 3;00 PM | IHG Learning Hour Session on Organic Acid Analysis – The Maastricht Method Resource Person: Dr. Irene Körver-Keularts, Maastricht University Medical Center, The Netherlands | Online via Zoom Register | Institute of Human Genetics, NIH-UP Manila |
| February 28 Rare Disease Day | Distribution of DME, Medical Equipment, and Supplies from Katie Nues Foundation | Lipa City, Batangas | Rett Syndrome Philippines and PSOD |
| February 28 | PSOD Cebu Family Day at Cebu Ocean Park | Cebu City | Coordinated by PSOD Cebu |
| February 28 | Light Up for Rare, 7:00 PM | Participating Sites | Coordinated by PSOD |
Light Up for Rare Participating Sites
As of 27 February 2026:
- Rizal Monument, Manila
- Fort Santiago, Intramuros, Manila
- National Museum of Fine Arts, Manila
- Clock Tower, Manila City Hall
- Building Youth Empowerment SDEC Manila, Vitas Skatepark, Tondo, Manila
- University of Santo Tomas
- De La Salle University
- Parqal
- 8912 Asean Avenue, Aseana City, Parañaque
- Quezon City Memorial Circle, QC
- National Council for Disability Affairs, QC
- People’s Park, McArthur Highway, Valenzuela City
- Family Park, Karuhatan, Valenzuela City
- Arkong Bato Park, Valenzuela City
- DOH Center for Health Development CAR, Baguio City
- Persons with Disability Affairs Office, Baguio City
- Plaza del Gobernador Calapan City, Oriental Mindoro
- Roxas Hall, West Visayas State University, Iloilo
- SM City Seaside Cebu
- Cebu Provincial Capitol Building, Cebu City
- Cebu-Cordova Link Expressway Bridge (CCLEX)
- City Hall, Cebu City
- Leyte Provincial Capitol, Palo
- I Love Tacloban. Tacloban City Hall
- SM Lanang Premier, Davao City
Campaign Materials
Download NRDW Campaign Materials (Videos, Design Templates) and Information Pack at http://bit.ly/NRDWmaterials
Social Media
Partner Organizations Philippine Society for Orphan Disorders, Inc. Department of Health Institute of Human Genetics, National Institutes of Health, UP Manila Newborn Screening Reference Center, NIH, UP Manila Newborn Screening Centers Volunteer Youth Leaders for Health-Philippines
School-based Organizations Sultan Pax Mangudadatu Islamic College Asian Medical Students’ Association – University of Santo Tomas Asian Medical Students’ Association – WVSU Barkada Kontra Bisyo Plus ELITE (F.E.Barzaga Integrated High School) Bicol University Symbiosis Bulacan State University College of Medicine Student Council Cavite State University – The Asclepian Society Manila Business College – Junior Business Administration Association MICROBIA (WVSU) NourishNet Project Philippines Order of Asclepius (WVSU) Pamantasan ng Muntinlupa-Ospital ng Muntinlupa Medicine Student Council Rotaract Club of University of Caloocan City SAC NURSING STUDENT COUNCIL Student Nurses Association of the Philippines St. Anthony’s College-Antique The Pre-Medical Organization of the Ateneo – Senior High School The UPLB Genetics Society UP Mindanao League of DOST Scholars UPV PH Pub Vital Signs WVSU Arts and Sciences Student Council, Inc. WVSU Medicine Student Council
Community-based Organizations A2D Project – Research Group for Alternatives to Development, Inc. Alliance of Philippine Pre-Medical Societies, Inc. (APPSoc) Alpha Kappa Gamma- Kappa Gamma Chapter Kapalong Building Youth Empowerment NourishNet Project – Cebu Chapter Supreme Student Council Society of the Philippines YACAL Pilipinas Youth Service Philippines – Cebu Chapter Abtik Na Batan-on Sa Lawis Kabataang Kaisa sa Kaunlaran Kangodaan Peace Alliance NourishNet Project – Cebu Chapter NourishNet Project – Cebu Chapter Rotaract Club of San Pablo City State of Youth Iligan Youth Alliance for Community Care, Environmental Sensitivity, and Sustainability (Youth ACCESS) Youth Service Philippines – Iligan Chapter