HANAP stands for Hemophilia Awareness and Advocacy Program
OBJECTIVES: (What do we want to do? )
The Pilipino word “hanap” means to seek. Seeking is a more intense way of looking, searching, finding, exploring, or digging (as in digging for hidden treasure). This is what we want to do in HAPLOS COMMUNITY for persons with hemophilia and other inherited bleeding disorders (PWH):
- Seek, search, reach out to and identify persons with hemophilia (PWH).
- Develop, operate, maintain, update and sustain a hemophilia registry of all persons with hemophilia (PWH).
- Explore and develop different ways and means to nurture, educate, enable, empower, and sustain them.
- Get the help and support of others in building an empowering, caring and serving community for them. (Government, Financial, logistical and organizational support).
- Secure financial support for all the programs that may be needed to accomplish all the above.
WE BELIEVE that with proper support, we can help provide a better quality of life to persons with hemophilia, Von Willebrand Disease(VWD) and other inherited bleeding disorders (PWH).
GOALS (What do we want to accomplish?):
- Information campaign about Hemophilia and HAPLOS
What is Hemophilia and other inherited bleeding disorders?
- rare disease, symptoms
- effects of lack of proper care and treatment
- its needed care and treatment
- need for adequate government support
- Need for a support Community
- Why help Persons with Hemophilia(PWH)
Who is HAPLOS?
- Answering a call to help Persons with hemophilia – Mission and Vision
- SEC Registered as a Foundation - History
- Foundation and Community- governance
- Services and programs
- Advocacy – government support for hemophilia, private and business sector program support Partnership and Alliance Programs
- Needs as an organization
- Advocacy Programs
For Government support
- PhilHealth benefits through direct appeal to PhilHealth.
- Inclusion in RA 10747 - Rare Disease Act of 2016 through lobbying for inclusion in the IRR.
- Seek support of the Executive Branch to support for the two petitions above through Presidential directives and Executive Orders.
- Seek support of Senate and Congress members through Congressional action for the granting of funds through the General Appropriations to PhilHealth so that they can implement proposed increases in healthcare benefits for persons with hemophilia..
- Seek support of Senate and Congress members for the issuance of granting of additional funding through the General Appropriations to the National Institute of Health /DOH for implementation of RA 10747.
- Support for Awareness Programs through DOH( national and regional health Centers, etc), DEPED,
- Tax and duties incentives for Private companies offering benefits to Persons with Hemophilia
- Government purchase of Blood Products and subsequent resale to patients as subsidized prices.
For Government Hospitals and Health Centers, Private Hospitals, Healthcare Professionals and Providers support.
- Secure Government and Private Hospitals support in establishing Hemophilia Treatment Centers
- Secure the support of Healthcare Professionals and other Healthcare Providers in making available proper hemophilia care and treatment.
- Establish Partnership in Mission with these institutions in pursuit of the above objectives
For Private, Business Sector and Professional Organization Support
- Partnership in Mission for Hemophilia Awareness and Advocacy Program that provides for an institutional support with participation of employees, organization and community members.
- HAPLOS Community Program funding support
For Patients Groups, Schools, Civil Society Organizations and other communities
- Partnership, alliances and membership in larger patient groups such as PAPO and others with common interest.
- Partnership in Mission with Civic organization such as Rotary Club, Lions, etc.
- Partnership in Mission with Church Communities
- Partnership in Mission with University and College School Communities
