PSOD Goals Include

  • To increase public awareness about rare disorders in the Philippines;
  • To develop and establish a nationwide registry of relevant and material statistical information, medications, drug trials and all other pertinent information about orphan disorders;
  • To assist patient and their families thru referral to partner institutions for assistance to diagnose and/or confirm a rare disease condition of the family member; provide genetic counselling; manage the condition of the rare disease; to arrange access to hospital facilities and support for patients who cannot afford to be on paying patient status, and financial/non-financial support to access treatment/therapies/life-saving medical devices;
  • To assist family support groups for patients with rare disorders thru education and capacity building, and network and linkages and access support;
  • To assist doctors and researchers in the management of these conditions thru establishing communication and coordination channels with patients’ families, network and linkages with health facilities and relevant non-profit sectors, and generation of resources to care for patients with orphan disorders and their families;
  • To promote and support relevant and timely researches for a better understanding and treatment of orphan disorders;
  • To participate in policy formulation, advocacy and legislations of national and international relevance about orphan disorders;
  • To develop and provide training for parents, families, health professionals, paramedical personnel and community health workers on the care of patients with orphan disorders;
  • To develop member’s core competencies in the management of orphan disorders; and
  • To be financially self-reliant and to mobilize resources in the pursuit of organizational objectives.

3 Year Targets

PSOD’s short-term targets are as follows:

  1. Include rare disease in universal health insurance coverage specially the ERT
  2. Get more government funding to co-pay for ERT thru the DOH National Center for Pharmaceutical Access and Management, the Philippine Charity Sweepstakes Office, the Philippine Gaming Corporation and from the pork barrel funds of our lawmakers
  3. Enact a Rare Disease Act of the Philippines

We seek the DOH’s endorsement  of the Bill on Rare Diseases. The Bill aims to:

  1. Ensure that every patient diagnosed to have a rare disease has access to timely health information and adequate medical care, including drugs and other healthcare products needed to treat or otherwise help them cope with their condition;
  2. Establish an office or program within the Department of Health to:
    1. Oversee research & development activities on rare diseases
    2. Design and maintain a rare disease registry which shall include data on rare diseases in the Philippines, patients afflicted with rare diseases, orphan drugs and products, and
    3. Conduct of public education programs to identify persons with rare diseases and help the public understand the special needs of such persons
    4. Provide regulatory and fiscal incentives to support research and development activities on rare diseases and the import or manufacture of affordable orphan drugs or orphan products; and
    5. Institutionalize a fiscal incentive system for agencies involved in clinical researches, patient care, medical information management, and other similar activities for the benefit of persons afflicted with a rare diseases.
    6. Increase participation of public-private entities in terms of awareness, advocacy, funding and other support for rare
    7. Strengthen service delivery to PSOD patients and families

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