OUR STORY

In the Philippines, over the past fifteen years, a handful of Philippine medical professionals from the University of the Philippines, National Institute of Health, Institute of Human Genetics have been attending to these patients, dedicating themselves to create awareness in the country, and continue 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.

Because the nature of rare disorders are long standing, life threatening, progressive, and require multidisciplinary care, available therapies and food supplements likewise require life long administration. Until such time further breakthroughs happen (as we are very hopeful it will), without help from 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, at times not readily available, in June of 2006, The Philippine Society for Orphan Disorders, Inc.a non-stock, 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.

Filipino patients born with rare disorders (diseases) are “orphaned” by society. They suffer from social abandonment because of lack of existing network of support to aid them. Medical help is elusive under the conditions of the country’s health priority.

The nature of their illness is hardly known due to lack of information and only a few medical professionals, particularly in the country, are aware of these disorders and know how to diagnose and address these conditions.

Over several decades research and clinical trials worldwide have been very slow due to only a handful of known cases. However in recent past, the tireless efforts and the admirable dedication of medical researchers, professionals and drug companies in developed countries have resulted in breakthrough therapy and hopefully, a possible lifelong cure for a growing number of the rare disorders.