Hello friends! Please do me a little favor. This may take a minute of your time but I believe its worth it. Sign the petition now. change.org/p/senator-teofisto-guingona-iii-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 countrys 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.
Posted on: Wed, 10 Sep 2014 05:56:16 +0000
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