Health Promotion and Advocacy Working Group
Senator Pia Cayetano (https://www.fb.com/officialpiacayetano) |
SB 2098 - An act promulgating a comprehensive policy in addressing the needs of persons with rare disease (Read the Full Text, pdf) |
The Official Publication of Volunteer Youth Leaders for Health - Philippines
VYLH-Philippines is a network of pro-active, service-oriented youth leaders and youth organizations linked by the common interest of volunteerism and public service, to improve birth outcomes through advocacy.
VYLH-Philippines is a network of pro-active, service-oriented youth leaders and youth organizations linked by the common interest of volunteerism and public service, to improve birth outcomes through advocacy.
VYLH-Philippines is a network of pro-active, service-oriented youth leaders and youth organizations linked by the common interest of volunteerism and public service, to improve birth outcomes through advocacy.
VYLH-Philippines is a network of pro-active, service-oriented youth leaders and youth organizations linked by the common interest of volunteerism and public service, to improve birth outcomes through advocacy.
VYLH-Philippines is a network of pro-active, service-oriented youth leaders and youth organizations linked by the common interest of volunteerism and public service, to improve birth outcomes through advocacy.
Senator Pia Cayetano (https://www.fb.com/officialpiacayetano) |
SB 2098 - An act promulgating a comprehensive policy in addressing the needs of persons with rare disease (Read the Full Text, pdf) |
A rare disease, otherwise called an orphan disorder is any health condition resulting from genetic defects that afflicts no more than 1 of every 20,000 individuals in the country. Rare disorders afflict babies in all socioeconomic levels. Besides the little information available about their nature, what makes dealing with rare disorders even harder is that they are long-standing, progressive, disabling and life threatening.
Read more: VYLH-Philippines Primer to the Annual Rare Disease Week CelebrationWe constantly need to raise awareness on rare diseases among decision makers, health professionals and the general public.Information is key to improving living conditions for rare disease patients; raising awareness is therefore one of our primary goals.