Philippine Society for Orphan Disorders, Inc.

Pompe Disease, Gaucher Disease, Methymalonic Acidemia (MMA), Maple Syrup Urine Disease(MSUD), Fabry Disease, Galactosemia, , and Mucopolysaccharidosis. These are some of the sixteen RARE or ORPHAN metabolic disorders, which afflict Filipino children. There are about 165 documented cases of these RARE or ORPHAN disorders in the Philippines.

Several agencies are involved in helping and providing the support to these children such as UP National Institute of Health, headed by Dr Lulu Bravo ; Institute of Human Genetics , Dr Carmencita D. Padilla , Director and founding chjairman of PSOD;, and Genzyme a biotech company spearheaded by Dr Margarita Jimenez and Dr Patrick Granjard and Philippine Society for Orphan Disorders , Ms Cynthia K. Magdaraog as President.

Philippine Society for Orphan Disorders, Inc. was organized in 2006 whose vision is to be the central network for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for individuals with orphan or rare disorders in the Philippines.

Senator Edgardo Angara, also lend his support to this endeavor by filing Senate Bill 3087, the “Rare Disorder Act of the Philippines”. This bill intends to promote greater awareness about these rare disorders and to determine ways of funding for research and medical training.

A welcome support also came from celebrity Carmina Villaroel who endorsed the Philippine Society for Orphan Disorders, and she encouraged others to support the cause of the PSOD

Let us support this worthwhile cause by promoting public awareness about these rare diseases.
To contact PSOD Inc:
email: psod_sally@yahoo.com
www.psod.org.ph
Telephone: 636-46-76

PS: I thought these disorders are only for our medical books. I never thought that there are so many cases of these rare metabolic disorders here in the Philippines. I laud the efforts of the people behind the agencies in providing care to these patients. The physicians, parents, other health care providers deserves recognition for their efforts.