Philippines 1 project
National Registry of Haemophilia and Allied Bleeding Disorders
Partner institution
Philippine Haemophilia Foundation INC., Manila
Represented by
Dr Flerida G. Hernandez, MD
Duration
3 years, Q3 2012 – Q3 2015
Status
Completed
Objectives
- Create a national registry of haemophilia and other bleeding disorders
- Educate the medical, paramedical practitioners and general population about haemophilia and allied bleeding disorders
- Gather data essential for lobbying support from the national government
- Encourage haemophilia advocacy in the countryside
- Empower haemophilia support group
- Strengthen partnerships with stakeholders
Achievements
- Increased haemophilia know-how and awareness led to higher number of referrals to specialists across the different islands
- Increase of accurate diagnosis and appropriate care delivery in collaboration with healthcare professionals, the patient organisations and authorities
- Raised interests by health authorities and institutions on the needs of people with haemophilia and on how to improve haemophilia care in the country
“Cebu is the main city of a region made up of lots of islands, and whilst we do have a trained lab technician who can do coagulation testing, it can be difficult for patients to get here. That’s why we’ll be going out to local areas to teach them how to do the basic tests in their own hospitals,” Dr Mae Lepatan, project team member.
“There is plenty of need and therefore there are plenty of opportunities for volunteers in our region. Whether it’s raising awareness of haemophilia in the local community or updating patient files, volunteers here can find a role that both suits their skills as well as benefits the haemophilia community. I therefore look forward to this project motivating our local haemophilia chapter and its volunteers to be active in this region,” Dr Ong, project team member.
