After 5 years since our formation as an organization, we have now clustered the PSOD activities under 4 general programs:
- Patient and Family Welfare – which is the core of the program
- Awareness and Advocacy – which is the pre-requisite in order to tap partners and support
- Resource Generation – which is the life-force, so to speak
- Program Development – which is the way to grow the organization and the expand our advocacy
1. Patient and Family Welfare
Under Patient and Family Welfare, we focus on two general areas: Patient Care and Family Support
Patient Care centers on networking for support in order to provide the critical medical and non-medical needs of the patients. This includes looking for the ways and means to provide the critical medical and non-medical needs of the patients such as
- Referral for diagnosis and medical management
- Access to treatment and therapy
- Subsidy for diagnostic and monitoring tests
- Purchase of assistive devices
Our major partner for the patient care includes the Institute of Human Genetics of the National Institutes of Health, University of the Philippines Manila. IHG currently does the medical management of majority of our patients thru its affiliate hospital, the UP-Philippine General Hospital. PSOD also refers to IHG patients for diagnosis and confirmatory testing, genetic counseling. They are also our partner in awareness and education of patient families, other stakeholders and the general public.
2. Awareness and Advocacy Program
Under Awareness and Advocacy, we focus on stakeholder awareness which we hope to lead to participation and support.
Our activities include:
- Periodic updates to partners and friends as well as potential supporters thru newsletters, e-bulletins, our website and the social network, Facebook in particular
- Stakeholder orientations through seminars or talks
- Photo and tarp exhibits in schools, hospitals, malls and other venues
- Tapping celebrity endorsers for our collateral materials
- Networking with like-minded orgs such as groups for persons with special needs to have a consolidated voice for lobbying for support and awareness
- Spearheading the annual National Rare Disease Week celebration and awareness campaigns
- Organizing ‘rare’ events to bring attention to our advocacy
- Partnering with media agencies or individuals in media to have periodic news or feature about our advocacy
- Lobbying for the enactment of a Rare Disease Act of the Philippines and conducting a signature campaign to push our lawmakers to enact the bill
3. Resource Generation
Under Resource Generation, we focus on raising resources for our 4 programs.
- Cash and non-cash donations for the critical life-saving medical and non-medical needs of our patients, programs and operations of the organization
- Volunteers for the various programs and activities of PSOD
- and others
PSOD taps these resources through:
- Appeal to key government agencies and pharmaceutical companies to fund or provide the life-saving treatment of our patients
- Utilization of social network sites such as Facebook to call for donations
- Networking with local government units, socio-civic groups, foundation and similar organizations for cash or non-cash donations such as free surgeries, free transportation services, etc.
- Organizing fundraising activities such as Fly for Rare (a kite flying event and competition) and film-showing and selling merchandise such as t-shirts, Christmas cards and cookies
- Sending out solicitation letters to politicians and corporations under their CSR
- Year-round appeal for donation on our website and collateral materials
- Introduction of the endowment fund we hope to soon start
- Strategic partnerships w/ medical institutions, schools, socio-civic groups for volunteers to activities and patient and family welfare and awareness and advocacy
4. Program Development
Program Development focuses on how PSOD can further grow and strengthen its program implementation and advocacy.
- Research for policy formulation
- Developing and strengthening the informal patient family support under the PSOD umbrella
- Accreditation by relevant government agencies
- Improving donor management
- Networking and establishing linkages or creating partners and friends for support
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