
Hand in hand, day by day: The world marks the 8th Rare Disease Day, focusing on the daily lives of patients, families, and caregivers who are living with a rare disease. This may sound strange to you, but did you know that the Philippines has been celebrating National Rare Disease Week on the last week of February since 2010? Last week, we received this invite to celebrate the 6th National Rare Disease Week on Feb. 21-28 as the country joins hands with the rest of the world in marking the 8th Rare Disease Day with the theme “Living with a rare disease: day-by-day, hand-in-hand.” Over 80 countries participated in the celebration last year. Since 2010, the last week of February (yes, after Valentine’s Day and this year, after Chinese New Year) has been declared as National Rare Disease Week in the Philippines by virtue of Presidential Proclamation 1989. Since then, the Philippine Society for Orphan Disorders, Inc. (PSOD) has been serving as the central coordinating organization for the Rare Disease Awareness Week campaign as it brings together healthcare institutions, local government units, government agencies, civic organizations, media and other private and public institutions to create awareness and support for Filipinos with a rare disease. This year, the organizers are spearheading a stronger awareness campaign and batting for the early deliberation and passage of a Rare Disease Act currently sitting in the House of Representatives. The campaign is aimed primarily at the general public and “seeks to raise awareness among Read More …