As in the past 5 years, The Philippine Society for Orphan Disorders, Inc. joins the global community of physicians patient organizations, and advocates in celebrating Rare Disease Day every last day of February. This year , Feb. 28 martks the 7th international Rare Disease Day. This year’s awareness campaign theme focuses on Care , engaging various stakeholders to “JOIN TOGETHER FOR BETTER CARE” of persons afflicted with a rare disease (also known as orphan disorders) . The call for an international collaboration was launched by EURODIS in 2008. While it started as a Europen event in coordination wth the Council of National Alliances, its collaboration has reached worldwide, where 70 countries (as of 2013) have participated in powerful visibility for awareness and advocacy, creating impact on the lives of thousands of persons afflicted with rare disease.
The 6th ICBD is being organized by the Institute of Human Genetics-National Institutes of Health, University of the Philippines Manila and the Asia Pacific Society for Human Genetics, with support from the March of Dimes Foundation and Centers for Disease Control and Prevention, USA.
CONFERENCE THEME: Enbedding Birth Defects in the Continuum of Care
“Our children and the children of the next generation need not suffer from severe mental retardation, cataract, anemia, kernicterus, and even death when they could lead normal lives,” said Senator Loren Legarda during the 10th Annual Newborn Screening Convention at the SMX Convention Center, Mall of Asia, Pasay City, October 2.
Legarda, who co-authored Republic Act 9288, or the Newborn Screening Act of 2004, with former Vice President and Senator Noli De Castro and former Senator Juan Flavier, explained that she supported the passage of RA 9288 because she believed that it is the government's mandate to protect and promote the rights of children to survival and to provide them an opportunity to live a full and healthy development as individuals. She also filed Senate Bill 4, a proposed legislation aimed at institutionalizing mandatory universal healthcare coverage for poor families.
The Newborn Screening Center – National Institutes of Health (NSC-NIH) recently moved to its new office in UP Ayala Land Technohub Complex, Diliman, Quezon City.
NSC-NIH celebrated its opening and office blessing on 18 November 2011. The blessing was officiated by Fr. Mike Ty of the Parish of the Holy Sacrifice. The event was attended by UP President Alfredo Pascual, UP Manila Chancellor Manuel Agulto, Assistant Secretary of Health Paulyn Jean Ubial, Center for Health Developmetn-4A Regional Director Juanito Taleon, NIH Director Vicente Belizario, international experts, partners, and staff.
Claiming thousands of lives each year, and amounting to several billions of pesos in healthcare and treatment cost, cancer has become serious public health issue and both a clinical, as well as economic burden. Cancer research efforts are therefore being channeled toward discovering more effective therapeutic strategies and developing preventive and screening methods.
The Institute of Human Genetics (IHG) of the National Institutes of Health, University of the Philippines Manila, the largest provider of genetic services in the country, celebrated its 10th year anniversary (1999-2009) last February 23-26, 2009. The Institute has lined up several scientific events in this celebration to showcase genetics in the country, as well as the Institute’s researches and service programs.
Senator Edgardo Angara highlighted the celebration of the 10th year anniversary of the Institute of Human Genetics with a keynote speech last February 25, 2009 at the Rigodon Hall of the Manila Hotel. Senator Angara, who is a staunch supporter of the scientific community, reaffirmed his commitment to support the advances in human genetics in front of hundreds of participants consisting of doctors, public health workers, researchers, scientists and other stakeholders from all over the country.