Support the enactment of a "Rare Disease Act of the Philippines"

Many of us may know people with rare disorders or diseases but not many of us know that a rare disease act is being pushed through congress right now. That's right, a rare disease act was filed by Senator Edgargo J. Angara last February 23, 2009. Although it was back in 2009, the legislative status of the act is still pending in the committee.

The Philippine Society for Orphan Disorders, Inc. (PSOD), a non-profit organization, founded by chairman Dra.  Carmencita Padilla, Geneticist, and it's president Mrs. Cynthia Magdaraog, a mother of a child with Pompe disease. PSOD has vision of "Our 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 the individuals with orphan or rare disorders in the Philippines" and a missoion to "Our mission is to uphold the primary concerns and welfare of individuals with rare disorders by". Before PSOD was founded, in the past fifteen years medical professionals from the University of the Philippines, National Institutes of Health, and Institute of Human Genetics have been continuously attending to the needs of these orphans.



PSOD is now pushing for Senate Bill No. 3087: Rare Diseases Act of the Philippines. To get the the bill passed, PSOD needs 500,00 signatures. Campaigns for these signatures have been on-going and with the help of many organizations and the internet it is quickly turning into a reality. The Volunteer Youth Leaders for Health (VYLH) are also actively getting signatures for the said campaign. Look for a VYLH member in your school and sign-up for the bill.

Here are links to know more about the bill and how you can sign-up.

• http://www.senate.gov.ph/lisdata/103909260!.pdf
• http://www.psod.org.ph/ver2/about
• http://www.psod.org.ph/ver2/help/support-the-enactment-of-a-rare-disease-act-of-the-philippines

Here's  a video from Youtube to know more about rare diseases, created by PSOD: