NRDW goes digital, to mark 12th year on top of COVID19 pandemic
In the Philippines, National Rare Disease Week which is held every last week of February places the concerns of the Filipino rare disease community on the spotlight. The event which culminates to the global observance of Rare Disease Day aims to raise awareness and public support for people living with rare diseases.
On February 22-28, the country will be observing the 12th National Rare Disease Week pursuant to Presidential Proclamation 1989 which was signed in 2010. Sustaining the momentum from the 2020 global theme “Rare is Many. Rare is Strong. Rare is Proud”, this year’s NRDW continues to reframe perceptions of what it means to be “rare”. Moreover, this year’s NRDW is held on top of a global health crisis – the COVID-19 pandemic – which further demands the need to hear the concerns of people living with a rare disease.
What does it mean to be rare?
Being rare does not mean being alone. Being rare does not mean being voiceless. We need society to understand that millions of people living with a rare disease around the world face inequitable access to diagnosis, treatment and care.
Rare is many. Rare is over 300 million people* around the globe. Collectively, they are comparable the third largest country in the world.
Rare is strong. Across borders and diseases, the Rare Disease Community works together to raise awareness and advocate for equity.
Rare is proud. Being neglected by society should be a thing of the past for rare disease patients. Show your support for the rare disease community with pride! Beyond their family, friends and carers, everyone can be part of this hope-giving advocacy!
It’s time to show our support for people living with a rare disease and show that rare is many, rare is strong and rare is proud!
NRDW goes digital
Due to the COVID-19 pandemic, public awareness campaigns have entered a new age as the formerly complementary media became the main thoroughfare in reaching the general public. In line with this, the Philippine Society for Orphan Disorders (PSOD) together with the Volunteer Youth Leaders for Health-Philippines (VYLH-Philippines) has continued the annual call for youth partners as main actors in spreading awareness about rare diseases and the concerns of the Filipino rare community. As of posting, more than 57 partner organizations have already signed-up as media partner for NRDW 2021.
The highlight of this year’s observance of NRDW is a special webinar to be held on February 25, 2021 (4:00 PM). Organized with the theme, “Puhon: Progress and Perspectives in Caring for the Filipino Rare”, the webinar aims to provide an overview on what is a rare disease, local and international policies, and updates from the Department of Health and PhilHealth. It will also present the experiences of a parent-advocate on living with a child with a rare disease. The free public webinar is going to be spearheaded by the University of the Philippines Manila and the UP National Institutes of Health – Institute of Human Genetics together with the Department of Health, National Council on Disability Affairs, Philippine Pediatrics Society – Section of Genetics, PSOD, and VYLH-Philippines. Puhon is a Visayan word which means hopefully or God-willing.#
To register to this year’s NRDW webinar, go to bit.ly/NRDWwebinar2021
To download our campaign info pack and materials, go to bit.ly/NRDW2021materials
For updates, follow our official campaign social media pages
Facebook.com/RareDiseaseWeekPH and Facebook.com/PSODCareForRare