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”
DLSU 247th Naval ROTC Unit holds fundraiser for PSOD MANILA – Last July 1-5, 2019, the 247th Naval Reserve Officers Training Corps Unit of De La Salle University held the Reserve Officers Training Corps Week. The Medics company of the ROTC Unit coordinated with the Philippine Society for Orphan Disorders to assist
Together in Mission: PSOD, DLS-CSB sign MOU on education and rare disease awareness SAN JUAN CITY – Last March 28, 2019, representatives from the Philippine Society for Orphan Disorders (PSOD), De La Salle – College of Saint Benilde (DLS-CSB), rare disease advocates, patients and families gathered for the memorandum of understanding (MOU) signing
PSOD represents PHL, joins Rare Disease Day Policy Event at the United Nations NEW YORK CITY – Last February 22, 2019 (PHL Time), the NGO Committee for Rare Diseases together with its partners AGRENSKA, EURORDIS and Rare Diseases International organized a Policy Event at the United Nations Headquarters held in observance of Rare
National Rare Disease Week unites stakeholders and youth orgs for rare disease awareness With the theme, “Bridging health and social care”, rare disease advocates, patients, families, and youth leaders joined together in the annual observance of National Rare Disease Week (NRDW) 2019 last February 22-28, 2019. This year’s NRDW was launched with the
