The Institute of Human Genetics (IHG) at the National Institutes of Health, UP Manila (UP-NIH), is an internationally recognized center for excellence in the field of genetics committed to serve the Filipino people. It is the largest provider of genetic services in the country. All clinical geneticist practicing in the different parts of the Philippines are in direct collaboration with IHG in providing genetic services to patients seen at the Philippine General Hospital, public health hospitals and private health facilities all over the country.
Thru a memorandum of agreement, PSOD and IHG agreed to collaborate and form a partnership to uphold the “Right to Life” and “Right to Access Health Support” for people born and afflicted with rare (genetic) disorders. The major thrust of the MOA is the referral of patients.
Under the MOA, PSOD refers to IHG inquiries received from patient families who need assistance in the following:
- Diagnosing and/or confirming a rare disease condition of a family member
- Genetic counseling
- Managing the condition of the rare disease, and
- Arranging with PGH the use of its hospital facilities and support for patients who cannot afford to be on paying patient status.
IHG to refer to PSOD patients who need financial/non-financial support to access treatment/therapies/life saving medical devices subject to the policies and conditions agreed upon.
IHG and PSOD shall, whenever required and possible, cooperate, collaborate, and jointly sponsor the following programs and activities:
- Advocacy and awareness campaign
- Patient family forum, training, and orientation
- Stakeholder’s orientation and education
- Policy recommendation and follow-up of legislative agenda and executive implementation to advance the national agenda for the welfare of people afflicted with rare (genetic) disorders