DOH kicks off Nat’l Rare Disease Week through its first ever symposium on rare diseases

In line with the passage of the Rare Disease Act of the Philippines (RA 10747), the Department of Health (DOH) in partnership with the University of the Philippines National Institutes of Health (UP NHI) launched the 1st Philippine Rare Disease Symposium with the theme: “Working Together for Better Care.”

The symposium aims to gather the representatives of relevant public and private stakeholders to create awareness and understanding of the recently enacted national policy on Rare Disease. Furthermore, the symposium envisions strengthening the pathway for collaboration among partners and stakeholders for the effective implementation of the national rare disease program.

“The DOH together with the NIH-UP, shall create a system for the identification, management and registration of persons with Rare Disease, including an effective referral system, to provide them with better access to support, treatment, and information. A technical group shall identify the needed drugs, product, and services of this group to ultimately incorporate this in the medical assistance or PhilHealth benefits provided to the public. The DOH shall also develop the expertise of health professionals in the country in terms of diagnosing, treating, and managing patients with rare diseases. Special consideration shall be given, such as provision of benefit similar to those given to Persons with Disabilities (PWDs). These are only some of the government’s undertakings to ensure that patients suffering from rare diseases are prioritized and given access to adequate health care and assistance,” Health Secretary Paulyn Jean B. Rosell-Ubial said.

Less than one year ago, when the Republic Act 10747 or what is commonly known as the Rare Disease Act was signed. The passage of this law gave new hope to Filipinos who are suffering from rare but often chronic, life-threatening and costly diseases. This vulnerable population has been, to an extent, neglected. Because of the rarity of their disease, not much poor assistance was given to them in the past. There is scarcity in terms of expertise and available treatment for these patients in the country. RA 10747 will address these gaps and provide the much needed attention this vulnerable group long deserves.

The World Health Organization defines a rare disease as an often-debilitating disease or condition with a prevalence of 0.65% to 1%. In the Philippines, a disease is considered rare when it affects one patient in every 20,000 population. Patients afflicted with rare diseases often have their quality of life reduced to taking medications, check-ups and suffering from pain. They are often dependent on other people to attend to their basic needs. They also need lifelong medical care, food supplements, medications and multidisciplinary therapies to alleviate the symptoms and effects of the disease.

“The DOH fully supports and recognizes the importance of the First Philippine Rare Disease Symposium to jumpstart the dialogue and collaboration among the different stakeholders to determine how best we can enforce and implement the law. We are committed to do our part to guarantee services that provide care for all life stages and address the burden of rare diseases in the country, Secretary Ubial concluded.

The Philippines will be celebrating the 8th National Rare Disease Week on February 22-28, 2017, joining hands with the rest of the world in the Rare Disease 2017 campaign with the theme “With Research Possibilities are Limitless”. The last week of February was declared as the “National Rare Disease Week” in the Philippines on February 8, 2010, through the Presidential Proclamation 1989.

Originally published in the DOH Website