Several rare diseases relate to with intellectual and developmental disabilities. Often, they directly cause the latter conditions.
Several rare diseases relate to intellectual and developmental disabilities. Oftentimes, they directly cause the latter conditions. This makes them all the more important health factors to recognize.
Despite this being the case, the Philippines still lacks ample understanding of rare diseases—and intellectual and developmental disability altogether.
Dr. Colleen Noelle Carlos-Viray, a volunteer-specialist at Special Olympics Pilipinas, shares pointers on how citizens like yourself can advocate for better public education on rare diseases and intellectual disabilities in the Philippines.
Why Advocate for Rare Diseases and Intellectual Disabilities in the Philippines?
In 2008, former United Nations Secretary General Ban Ki-Moon shared an eye-opening statement at the convention on the Rights of Persons with Disabilities and Optional Protocol.
“Experience shows that when persons with disabilities are empowered to participate and lead the process of development, the entire community opens up,” he said. Almost 15 years later, his words are unfortunately yet to be realized to their full extent.
Rare diseases, and the disabilities they cause, deserve their fair share of community efforts and government support in the country. While there is no specific data on the Philippines, global data records about 200 million people worldwide affected by disability. Given this number, developing countries have more of the share, with 16.41 in every 1,000 people.
Unfortunately, there is still a lack of solid support for the community. So how do we change that, you might ask? Here are some ways on how we, as individuals, can take action.
Raise awareness on rare diseases
Lack of education, as they say, is the root of ignorance. Some of the biggest roadblocks faced by persons with disability are misconceptions and lack of public awareness. Special Olympics Pilipinas believes that educating the public is the first step in closing that gap.
Medical professionals from reputable medical institutions like the National Institute of Health, Institute of Human Genetics, and the University of the Philippines champion persons with intellectual and developmental disability. In order to move the needle towards the change we want, we can encourage these stakeholders to step up.
Educate yourself about rare diseases
One can only wait so much for awareness to come. In order to champion people with rare diseases and intellectual disabilities in the Philippines, start by educating yourself. Follow reputable sources that can give you updates on the topic. Big changes, after all, come from small efforts.
To learn more about rare diseases or intellectual and developmental disability, visit reputable sites such as the United States National Organization for Rare Disorders and Special Olympics International.
Support affiliated organizations
Some of the best sources of information about rare diseases are research facilities and other organizations that support the cause. Whether you want to stay updated or donate to these outfits, involvement takes us closer to the goal.
Volunteer and make a change
Change requires action. Volunteerism is such an important element for the community. It does more than simply spreading awareness. In fact, it also empowers the very community that you are trying to help.
Special Olympics Pilipinas, for one, supports people with rare diseases, and intellectual and developmental disability. We work towards breaking the stigma that they cannot achieve significantly the same way neurotypical citizens can.
By using sports, we foster a type of community—rooted in volunteerism—to create an environment that uplifts them. By allowing them to develop and hone skills in competitive sports, we send the message that people with intellectual disabilities in the Philippines are as valuable as any other member of society.
Champion Rare Diseases by Volunteering at Special Olympics Pilipinas
We believe that people with intellectual disabilities in the Philippines deserve the same opportunities that others experience. By first understanding the common causes of intellectual and developmental disability, as well as rare diseases, we can better support persons who are diagnosed.
Help us work towards change by joining us at Special Olympics Pilipinas. Learn more about us here.