by Pauline Anthonette De Juras (Hachimoji)
“Rare is Many. Rare is Strong. Rare is Proud” is the chosen theme for this year’s National Rare Disease Week (NRDW), held on February 22 to 28. Enjoined by the Volunteer Youth Leaders for Health (VYLH) - Philippines and its partner organizations, the 12th year of this national event pushed through even with the challenges brought by the COVID-19 pandemic. The celebration transitioned into the digital space with a webinar and a series of infographics that raised awareness about rare diseases and advocated for a more equitable and inclusive society.
How rare is rare?
Rare diseases are long-standing, progressive, disabling, and life threatening conditions that affect a significantly small number of people. There are different categorizations per country when it comes to the designation of a rare disease, with the Philippine health sector identifying rare diseases as those that affect 1 in 20,000 individuals.
Having these kinds of diseases pose numerous challenges including lack of access to correct diagnosis, inadequate information about these illnesses, and unavailability of appropriate healthcare and treatment. Aside from medical challenges, rare diseases also constitute social consequences such as stigmatization, descrimination, isolation, and exclusion. Their innate rarity leads to the lack of awareness about the illnesses and the lack of support network to aid the patients; hence, coining the term “orphan disease” for these rare diseases.
As of 2019, the European Journal of Human Genetics identified more than 6,000 rare diseases in the world, in which among sixty-six of these are known to have afflicted Filipinos. Some of these include Pompe Disease, Gaucher Disease, Maple Syrup Urine Disease (MSUD), Fabry Disease, Galactosemia, Mucopolysaccharidosis and Treacher Collins Syndrome.
Through the large amount of people being affected by rare diseases, communities of rare disease patients and their loved ones have been formed to offer support to one another. These rare disease communities continually uplift each other in the spirit of commonality and togetherness, having experienced the challenges of rare diseases. Despite the challenges they may face, these communities work together to raise awareness and advocate for equity and inclusiveness, inviting every citizen to proudly use their voices for the unheard. Through these consistent efforts to raise global awareness, rare diseases are gradually being exposed to the public, allowing the recognition of their medical and societal demands which may lead to the continuous provision of support for all rare disease patients.
A Foundation of Hope for Philippine Rare Disease Patients
In the Philippine scene, the annual National Rare Disease Week is celebrated through the inauguration of Presidential Proclamation 1989 signed on February 8, 2010. This week-long event advocates for creating national awareness on rare diseases among the public and health professionals, gathering public support for the special needs of the patients. Additionally, the enactment of the Rare Disease Act (R.A. 10747) in March 2016 was a step towards having better inclusivity for persons with an orphan disease. The law led to the consideration of persons afflicted with rare disease as Persons with Disabilities (PWDs), allowing them to receive benefits inclusive of this designation.
As one of the active organizations that initiate the advocacy for national rare diseases, The Philippine Society for Orphan Disorders, Inc. (PSOD) serves as an alliance of patient-members and other like-minded individuals that strive towards the goal of inclusivity and awareness. PSOD was first established as a non-stock and non-profit patient support group for rare disease patients, founded in 2006. The organization aims to support the UP - National Institutes Of Health (UP-NIH) Institute of Human Genetics in providing access to medical treatment and support care of patients with orphan disease. Furthermore, it is their mission to uphold the primary concerns and welfare of individuals with rare disorders by directly addressing, supporting and protecting their health and general well-being.
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| GeneSoc Members (L-R) Brian Alfred Mortera (Crypton), Justin Gabriel Badlis (Crypton), Chantel Angeli Paña (Crypton), and Andriana Crisostomo (Ikirara) raise hands in support for National Rare Disease Week 2021. |
On the celebration of awareness
The global observance of Rare Disease Day persisted in the digital space through eye-catching online posts highlighting testimonies, advocacies, and how countries are celebrating the event. In the country, we celebrated National Rare Disease Week by conducting a webinar entitled, “Puhon: Progress and Perspectives in Caring for the Filipino Rare” on February 25, 2021. Participants in the celebration also commemorated through a NRDW profile picture frame to further spread awareness in the Facebook platform. Numerous media partners have also provided tremendous support in sharing the series of infographics and online campaigns of the National Rare Disease Week Philippines page. Along with VYLH - Philippines, GeneSoc and its other partner organizations have participated in the various mentioned events in the week-long celebration.
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