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113The Union of Local Authorities of the Philippines (ULAP), the umbrella organization of all the leagues of local governments and locally elected officials, is one with the Philippine Society for Orphan Disorders, Inc. (PSOD) in celebrating the 7th National Rare Disease Awareness Week on February 22-29, 2016. PSOD, an ULAP partner for health, has taken the initiative to be the central coordinating organization for the rare disease awareness week campaign in the country, bringing together different healthcare institutions, local government units, government agencies, civic organizations, media and other private and public institutions since 2011.
Over 80 countries celebrate the International Rare Disease Day on the last day of February. The Philippines, through Presidential Proclamation 1989, declared the last week of February as the “National Rare Disease Week”. These celebrations aim to raise awareness about rare disease and help rare disease patients be diagnosed early and receive proper medical care. More so, it’s objectives include to:
Ensure that policymakers understand and acknowledge rare diseases as a public health policy priority
Improve access to treatment and care
Support the development and implementation of national plans and policies for rare disorders
Help reduce isolation of people living with rare diseases and their families
Increase and improve rare disease research and orphan drug development
There are about 7,000+ identified rare diseases worldwide which are often debilitating, compromising patient’s autonomy and quality of life. 80% of these diseases are caused by faulty genes that anyone can be carrying without their knowledge, 75% affects children, 30% of patients with rare disease die before the age of 5 and 35% of deaths in the 1st year of life may be attributed to a rare disease. On average, it takes most rare disease patients 8 years to receive an accurate diagnosis and only 5% these conditions have a US FDA approved treatment.
Click the following link to view the Philippine country site: http://www.rarediseaseday.org/
You can also check out their Facebook page at https://www.facebook.com/RareDiseaseWeekPH