5th National Rare Disease Awareness Week

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.

In the  Philippines, Executive Order 1989 released last Feb. 8, 2010 designates each year the 4th  week of February as National Rare Disease Week.  Since then, efforts to progressively increase  awareness and advocacy campaigns have  resulted in formation of partnerships among  health institutions, physicans, like iminded social civic organizations, some private individuals, in  sharing a common  vision where persons afflicted (mostly children) can have access  sustainable health support to  improve their quality of life. This year  the patient and pararent organization seeks to work towards the passage of a law for the inclusion of this sector in the government’s thrust for Universal Health Program.

 

The video demonstrates the 2014 theme "CARE" showing the many facets of caring for people living with a rare disease and their families. The seventh Rare Disease Day takes place on 28 February 2014. "Join Together for Better Care" and participate! Join an activity taking place near you to demonstrate global solidarity. www.rarediseaseday.org The seventh Rare Disease Day takes place on 28 February 2014. This year's video demonstrates the 2014 theme "CARE" showing the many facets of caring for people living with a rare disease and their families.