Share Your Colours: NRDW 2022 to highlight rare disease patients and the role of the public in awareness promotion

Rare diseases refer to life threatening and chronically debilitating diseases that only affects few individuals in society. Aside from their low prevalence, special combined efforts are needed to address them. Throughout the world, people living with rare disease are among the underserved as they struggle to secure a diagnosis, find treatment, and access care.

In the Philippines, a disease is considered rare when it affects one patient in every 20,000 people in the country until a final definition is formalized by the Rare Disease Technical Working Group of the Department of Health (DOH). In 2016, the Rare Diseases Act of the Philippines (RA 10747) was enacted to provide a comprehensive policy on addressing the needs of Filipinos with rare diseases.

After almost six years, stakeholders have successfully advocated funding for the implementation of the law. In the 2022 General Appropriations Act, 104.9 Million Pesos was specifically intended for this purpose and lodged in the University of the Philippines – National Institutes of Health. At present, a five-year plan, the Integrated Rare Disease Management Plan 2022-2026 is being crafted to guide funding utilization and future allocation. Also included in the plan is the preparation of guidelines for the preparation of a rare disease list by professional medical societies.

The funding development also came in time with the adoption of the Resolution on “Addressing Challenges for Persons living with a Rare and their Families” by the United Nations General Assembly last December 2021. The resolution calls upon member states to strengthen health systems, provide universal access to health care services, and implement national measures to ensure the people living with a rare disease are not left behind.

Join the NRDW Campaign and Share Your Colours

Pursuant to Presidential Proclamation 1989 which was signed in 2010, the National Rare Disease Week (NRDW) places the concerns of the Filipino rare disease community on the spotlight. 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, a globally coordinated movement on rare diseases held every last day of February.

On February 22-28, the country will be observing the 13th National Rare Disease Week with the theme, “Share your Colours.” Similar to the multitude of colors around us, rare diseases are also diverse. 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 which is diverse but united in purpose.

Social media remains an integral component of NRDW 2022. Advocates, volunteers are invited to use the campaign hashtags #CareForRarePH and #ShareYourColours on posting and sharing rare disease-related posts and participating to the various social media activities. Another main event of NRDW is the Light Up for Rare Campaign, a global invitation to illuminate a building or landmark on the evening of Rare Disease Day (February 28, 7:00 PM). The lighting event is an opportunity to participate in the chain of lights across the world and a symbolic way of breaking isolation globally at this time of the COVID-19 pandemic.

Together, we can paint a picture of a brighter future for people living with a rare disease.

To download our campaign info pack and materials, go to bit.ly/NRDW2022materials

To register as a partner youth organization, go to tinyurl.com/NRDW2022

For updates, follow our official campaign social media pages
Facebook.com/RareDiseaseWeek and Facebook.com/PSODCareForRare

 

About 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 Rare Disease, visit http://www.psod.org.ph