Share Your Colours: NRDW 2022 to highlight rare disease patients and the role of the public in awareness promotion Rare diseases refer to life threatening and chronically debilitating diseases that only affects few individuals in society. Aside from their low prevalence, special combined efforts are needed to address them. Throughout
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
Rare Disease International Statement on COVID19 Response and Recovery What this global pandemic has shown is that “the virus does not discriminate, but its impacts do” - Antonio Guterres, United Nations Secretary General To ‘Build Back Better’, do not leave behind people living with a rare disease in COVID-19 response
Dear Moms, It's OK to stare: Here’s how you can help make this an inclusive world A few years ago, I was having coffee with my daughter Jessy when I noticed some kids from another table staring at her intently and whispering at each other with obvious wonder. My daughter,
Meet Krizelle: A #PinoyScientist living with a rare disease Portrait artwork (oil in canvass) of Krizelle working in the lab by artist Rachel Mindrup for her series "Many Faces of NF" Neurofibromatosis, or NF, is a rare genetic disorder that causes tumors to form on nerve tissue including
Rare Disease Spotlight: Get to know the key provisions of Republic Act 10747 and its IRR The National Rare Disease Week (Feb 22-28) and the International Rare Disease Day (Feb 29) has come and gone but the fight to raise awareness and uplift our friends and family afflicted with rare and orphan disorder still
Rare Disease Week 2020 to highlight what it means to be "rare" - Many, Strong, and Proud Rare diseases refer to life-threatening or chronically debilitating diseases which are of such low prevalence that require special combined efforts are needed to address them. In the Philippines, the last week of February is dedicated to
Family is Forever: Eximius BPO, PSOD bring joy to patient families for Christmas PASIG CITY - Last December 7, 2019, Eximius BPO and the Philippine Society for Orphan Disorders gathered patients and their families for an annual Christmas gathering at St. Paul College, Pasig City. On its fourth year, Eximilus BPO has been
Patient-Advocate spearheads Frozen II Benefit Screening for Rare patients, PSOD PASIG CITY – With two cinemas fully booked, the benefit screening for the Philippine Society for Orphan Disorders showed that Filipinos support the rare community. Organized by rare disease patient-advocate Juan Magdaraog, the benefit-screening featuring the Disney animated film Frozen II was held
Rare Disease Patient-Advocate to lead Benefit Screening for patients and PSOD This November, a special block screening of “Frozen II”, the sequel of the 2013 blockbuster animated musical-fantasy film, will be held for the benefit of rare disease patients and the Philippine Society for Orphan Disorders (PSOD). Organized by Patient-Advocate Juan Benedicto “Dickoy”
