Rare diseases refer to life-threatening or chronically debilitating diseases which are of such low prevalence that require special combined efforts are needed to address them. In the Philippines, the last week of February is dedicated to people living with a rare disease. This tradition began with Presidential Proclamation 1989 signed by then-President Gloria Macapagal Arroyo in February 2010.
On February 22-28, 2020, the Philippines will be observing the 11th National Rare Disease Week (NRDW). After this, the country will join the rest of the world for Rare Disease Day on the rarest day of all—February 29. Rare Disease Day is a global act of solidarity directed towards raising awareness and highlighting the challenges that people living with a rare disease and their families face every day.
With the theme, “Rare is Many. Rare is Strong. Rare is Proud”, this year’s observance of NRDW and Rare Disease Day marks the shift of the global campaign towards increasing equity for the rare disease community. This year’s message also reframes perceptions of what it means to be ‘rare’. Being rare does not mean being scarce. Being rare does not mean being voiceless. We need society to understand that millions of people living with a rare disease around the world face inequitable access to diagnosis, treatment and care.
NRDW 2020 is an opportunity to show your support for people living with a rare disease by showing that rare is many, rare is strong and rare is proud!
- Rare is many. Rare is over 300 million people around the globe. Collectively, they are comparable the third largest country in the world.
- Rare is strong. Across borders and diseases, the Rare Disease Community works together to raise awareness and advocate for equity.
- Rare is proud. Being neglected by society should be a thing of the past for rare disease patients. Beyond their family, friends and carers, everyone can be part of this hope-giving advocacy. Everyone can show their support for the rare disease community with pride.
This year also marks the fourth year since the enactment of Republic Act 10747 or the Rare Diseases Act of the Philippines which aims to institutionalize the care and welfare of Filipinos with rare disease and facilitate the collaboration of the government, the private sector, and health organizations.
On the international stage, the United Nations’ historical Political Declaration on Universal Health Care included a commitment to strengthen efforts to address rare diseases, marking the first time that rare diseases have been included within a UN declaration adopted by all 193 Member States, including the Philippines.
Along with the enactment of the Universal Health Care Act in the country, it is hoped that the delivery of services and government support for rare disease patients will improve as these laws take full effect in the coming years.
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About the Philippine Society for Orphan Disorders
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 be 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.
For more information about National Rare Disease Week 2020, visit www.psod.org.ph or contact info@psod.org.ph
