On February 22-28, the Philippines will be celebrating the 10th National Rare Disease Week. Together with the rest of the world, the country will also observe World Rare Disease Day on February 28 with the theme “Bridging Health and Social Care”. The theme highlights the need to bridge the gaps in coordinating medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.
There are over 6,000 rare diseases that affect over 300 million people worldwide. Each disease has an impact on everyday life, including the need for a daily care routine. For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.
Most rare disease patients have difficulties in completing basic daily tasks. As a result, the majority of care is usually coordinated by people living with a rare disease and their family members who spend a significant amount of time organizing care. Organizing care can involve researching local services, making phone calls, accessing treatments and rehabilitation, handling administrative procedures and adapting the home or work space. It becomes a complex and frustrating process, especially when a lack of coordination across services means having to repeat the same information over and over again. Communication between different services needs to improve so that services are delivered efficiently to meet the patients’ best interests.
This year also marks the third year since the enactment of the Rare Diseases Act of the Philippines (RA 10747) – a key legislation for the care and welfare of the Filipino rare disease patient by institutionalizing a comprehensive, integrative, and sustainable system that will facilitate the collaboration of government and non-government agencies, private sector, professional health organization, and academic institutions. Together with the recent enactment of the Universal Health Care Act (RA 11223), it is hoped that the delivery of services and government support for rare disease patients will improve as this law takes full effect in the coming years.
The annual observance of Rare Disease Day culminates National Rare Disease Week. Now on its 12th year, celebrating Rare Disease Day provides an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease. #
To learn more about this year's social media campaign, visit www.psod.org.ph or the National Rare Disease Week - Philippines Facebook page bit.ly/NRDWnote2019
Philippine Society for Orphan Disorders, Inc.
To learn more about this year's social media campaign, visit www.psod.org.ph or the National Rare Disease Week - Philippines Facebook page bit.ly/NRDWnote2019
Philippine Society for Orphan Disorders, Inc.
