Orphan disease Philippines

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.

Event organiser :

With the release of Presidential Proclamation No. 1989 on February 8, 2010 declaring the last week of February as ‘National Rare Disease Week’, the Philippine Society for Orphan Disorders, Inc. (PSOD) has taken the initiative in coordinating public and stakeholder awareness on the promotion and protection of the welfare of Filipinos with rare or orphan disorders. We aim to have a stronger awareness campaign for the general public this 2014 by involving all relevant stakeholders such as government agencies, healthcare institutions, local government units, non-government organizations, the media, and other private and public institutions.

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