National Rare Disease Week Media Release
The Philippines celebrates the 8th National Rare Disease Week on 22-28 February 2017 which, together with the global commemoration of the International Rare Disease Day, highlights the need to intensify the country’s efforts to provide adequate health care and government support to person’s afflicted with a rare disease, otherwise known as “orphan disorder”.
In the country, a disease is considered rare if it affects 1 in every 20,000 individuals or less. Those afflicted with rare disease suffer from social abandonment due to lack of existing network of support to aid them. The nature of rare disease is hardly known as well due to lack of information; and only few medical professionals in the country are aware of these disorders and how to diagnose and address these conditions.
The country recently enacted the Rare Diseases Act of 2016 (Republic Act 10747) which seeks to “improve the access of persons diagnosed to have a rare disease, or persons highly suspected of having a rare disease, to comprehensive medical care and to timely health information to help them cope with their condition.”
With this, the law mandates the provision of a basic benefit package by the Philippine Health Insurance Corporation (PhilHealth); medical assistance as provided in the Sin Tax Reform Act of 2012; fiscal incentives for donations intended for researches on rare disease, maintenance of the Rare Disease Registry, or for purchase of orphan drugs or products for use solely by persons with are diseases, as certified by the FDA. Further, under RA10747, patients with rare disease will also be considered as persons with disabilities and will be granted benefits and privileges such as priority programs and discounts as mandated by the Magna Carta for Disabled Persons.
Mr. Randy Martinez recounts the challenges of going back and forth to the hospital as her daughter Pauline seeks treatment for Gaucher disease. Pauline who in now 11 years old, was noticed to have a small bump on her left torso when she was six years. After several test, she was diagnosed with Gaucher disease. “Sana magpatuloy pa ang paggamot kay Pauline at marami pang tumulong sa kanya para dire-diretso ang gamutan. Para makapagtapos din siya ng pag-aaral”, Pauline’s father added.
Learn more about the National Rare Disease Week 2017 Social media campaign “#CareForRarePH Social Media High 5!” by visiting the website of the Philippine Society for Orphan Disorders (psod.org.ph/nrdw2017) or the National Rare Disease Week Facebook Page (fb.com/NationalRareDiseaseWeekPH). The social media High 5! is a collection of five social media deeds that can be done by anyone to show their support for the cause of Filipino rare disease patients.#
“Lalaban Kami” is the battle cry and theme song of National Rare Disease Week and the Filipino rare disease community. The song was launched in 2012. The song, “Lalaban Kami” expresses the intense will of children afflicted with a rare genetic disease, to fight the life-long challenges of their health condition.
Song Performed by : God’s Little Sparrows, Gail Blanco and Daryl Reyes, and Alvyn Tulagan
Written by : Edu Reyes, Tommy Katigbak, Alvyn Tulagan and Teddy Katigbak
Music by : Teddy Katigbak
Produced and Arranged by : Teddy Katigbak