"RARE DISEASE ACT OF THE PHILIPPINES"

Support our petition for the early deliberation and passage of "Rare Disease Act of the Philippines" introduced by Senator Edgardo Angara under Senate Bill 3087 and Congressman Arthur Pingoy, Jr., MD under House Bill 6937

The Bill seeks to establish a system that will help ensure early diagnosis and treatment of rare diseases in the Philippines.

A rare disease, otherwise called an orphan disorder is any health condition resulting from genetic defects that afflict no more than 1 of every 20,000 individuals in the country.

The Bill provides the creation of the Rare Disease Program at the Department of Health. It will ensure:

   *   Provision for early and sustainable care for patients suffering from
        rare disease
   *   Coordination of current activities of the DOH to provide patients and
        their families with better access to medical care, health information,
        and health products to treat their conditions
   *   Support for public education and information campaigns and health
        professional training
   *   Establishment and supervision of a system of research and
        development initiatives
   *   Coordination of resource generation efforts among relevant
        government agencies and private sector

The Philippine Society for Orphan Disorders anchors this undertaking on the constitutional right of a person's "Right to Life" and "Right to be provided with proper health care"

PLEASE JOIN THE CAMPAIGN TO INCREASE AWARENESS ON RARE DISEASES AND TO RALLY OUR LAWMAKERS to PASS A "RARE DISEASE ACT OF THE PHILIPPINES"

SUPPORT THE CAMPAIGN BY:

     1.  Signing on-line, and
     2.  inviting friends and relatives to sign online             
   
          To read full details of the bill and for more information about
                       the Philippine Society for Orphan Disorders, Inc.
                                     visit www.psod.org.ph
                                    Telefax: 632 725-6519
                                    Email: info@psod.org.ph
                Address: 24-D Goldland Plaza 8 Eisenhower St.,
                  Greenhills, San Juan, Metro Manila, Philippines