Victory
Petitioning Chairman, Senate Health Committee Senator Teofisto Guingona III and 2 others

Early Deliberation and Passage of the "Rare Disease Act of the Philippines" within the 16th Congress

Persons (mostly children) afflicted with a rare genetic disease 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. Because the nature of rare disease (otherwise known as orphan disorders) are long standing, life threatening, progressive and require multidisciplinary care, essential treatment and supportive care likewise require lifelong administration.

Persons born with and afflicted with rare or orphan disorders are a vulnerable and special population. Despite the small population, like any other Filipino citizen, they too have an equal right to life and and equal right to access health support.

The early passage of this legislation will ensure the inclusion of this sector in the Universal Health Program of President Aquino’s administration where "nobody is left behind"

The law will put in place a permanent and sustainable mechanism by which the State shall institutionalize a system that is comprehensive, integrative and sustainable, and will facilitate the collaboration of various stakeholders towards the provision of early and sustainable care of every person afflicted with rare or orphan disorders.

The Philippine Society for Orphan Disorders, Inc. a patient and family support program was organized to coordinate all viable efforts to sustain a better quality of life for Filipino citizens with orphan or rare disorders, most especially those who are financially marginalized and are unable to access early treatment and supportive care.

For these marginalized sector, access to health services and health coverage will reduce out of pocket spending of the family, minimizing the catastrophic expenditures that drive a family to poverty.

Your support and leadership in enacting the “Rare Disease Act of the Philippines” is very valuable and critical in providing the sustainable pathway to support, resources and hope

__________________

For the actual copy of the Senate and House version of the bill as filed:
Senate Bill No. 209 | Senate Bill No. 2279
House Bill No. 3634 | House Bill No. 3343 | House Bill No. 3896

This petition was delivered to:
  • Chairman, Senate Health Committee
    Senator Teofisto Guingona III
  • Chairman, House of Representatives Health Committee
    Congressman Eufranio Eriguel
  • 16th Congress of the Republic of the Philippines
    Honorable Members of the Senate and the House of Representatives


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