To support patients with rare diseases, different organizations aim to raise awareness on the various illnesses during the 16th National Rare Disease Week which will be celebrated on February 22-28 with the theme, “More than You can Imagine.”
Seven thousand rare diseases have been identified globally and 159 in the Philippines. With this, patients face challenges such as the difficulty in diagnosing rare diseases, leading to a more lengthy procedure for treatments.
At the same time, there is a lack of access to orphan drugs, which are specifically developed for rare conditions but are too costly for widespread production. This limits treatment options for many patients, leaving them with little to no effective medication.
Local experts and management guidelines are also limited.
The Department of Health, National Council on Disability Affairs, Philippine Society for Orphan Disorders, Volunteer Youth Leaders for Health-Philippines, and the Institute of Human Genetics-NIH UP will be organizing the event that aims to share the stories of patients and draw attention to rare diseases.
These advocates are calling for better public education and government support to bridge the gaps in rare disease care. The observance of the Rare Disease Week serves as a platform to push for these changes.
Meanwhile, National Down Syndrome Consciousness Month continues to highlight the importance of empowering individuals with Down syndrome, emphasizing inclusivity and maximizing their potential.
Experts stress that awareness is the first step in improving the lives of rare disease patients to improve delayed diagnoses, social isolation, and inaccessible treatments for patients. By Rhealyn Charwin and Blessah Joy Manuel
