The Philippine Society for Orphan Disorders, Inc. (PSOD) is a non-stock and non-profit organization established in 2006 to act as patient support group to persons afflicted with rare disease (otherwise known as orphan disorders).
To be the central network for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for the Individuals with orphan or rare disorders in the Philippines.
To uphold the primary concerns and welfare of individuals with rare disorders by directly addressing, supporting and protecting their health and general well being.
History of the PSOD
Since 1991, a handful of medical professionals from the Institute of Human Genetics (IHG) of the National Institutes of Health, University of the Philippines Manila have been attending to patients afflicted with rare diseases, dedicating themselves to create awareness in the country, and to undertake clinical trials to contribute to the body of world knowledge that would lead to improving the health of Filipino patients with rare disorders.
These dedicated doctors have been relentlessly sourcing the much needed funds from foreign and local donors, as well as arrange with drug companies to make available under compassionate use the special food formulas, medications, and enzyme replacement therapies crucial to sustaining and improving the health condition of patients.
Because the nature of rare disorders are long standing, life threatening, progressive, and require multidisciplinary care, available therapies and food supplements likewise require lifelong administration. Until such time further breakthroughs happen, without help from the government and the private sector, treatment is elusive for the patients due to its prohibitive cost and accessibility.
With increasing number of patients requiring huge amounts of funds which is at most time beyond the capacity of the most of the families, the Philippine Society for Orphan Disorders, Inc. (PSOD), a non-profit organization was organized to continue the efforts of these doctors to ensure sustainability of medical and financial support of patients with rare disorders in June of 2006.
With the help of IHG and its partner organizations and donors, PSOD works on becoming the central network for the advocacy and effective coordination of all viable efforts to sustain a better equality of life for individuals with orphan or rare disorders in the Philippines.
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