3rd National Rare Disease Week

PSOD took the lead in campaigning for awareness in the country on the 3rd National Rare Disease Week and 5th World Rare Disease Day. Over 40 organizations and institutions nationwide from the government and private sectors joined the campaign to increase public awareness about rare diseases in the Philippines. Presidential Proclamation No. 1989 declared every 4th week of February as the National Rare Disease Week. This year, the Department of Health has included the occasion in its annual calendar of events.

“Rare but Strong Together”

‘Solidarity’ was selected as the communication theme of the 2012 campaign to focus on the importance and the need for collaboration and mutual support in the field of rare diseases. The slogan of the 2012 campaign was “Rare but Strong Together” to highlight that ‘people active in the field of rare diseases are not alone and should not act alone in order to meet their objectives. Even though they are few and far between, collectively they are many and if they act together they will be stronger’ (Eurodis).

Adopting the international theme, PSOD called for the inclusion of rare diseases in the national health insurance and increased public-private partnerships for better healthcare, social services, and other support for individuals with rare disorders.

Media support

The advocacy was also picked up by the media during the campaign. PSOD advocates, patient-beneficiaries and their families were featured in ‘Mornings at ANC’, ABS-CBN’s ‘Krusada’, GMA 7’s “Reel Time’, ‘I-Witness’, ‘Reporter’s Notebook’ and ‘Manny Many Prizes’. Radyo ng Bayan, Sonshine Radio and a few local radio stations also invited advocates to talk about rare diseases in one of their programs. Friends from online and print media also helped promote public awareness through features on patient stories and by adding their voice in the call for better government support.

Volunteer Youth Leaders for Health

The increased nationwide coverage of the awareness campaign is largely due to the support of the Volunteer Youth Leaders for Health-Philippines which launched the ‘Juan for Rare’, ‘Schools for Rare’ and ‘One Day. One Hour.’ campaigns. VYLH-Philippines is a national collaboration of youth leaders of youth organizations in universities and communities in the country and part of an international effort to improve birth outcomes worldwide through advocacy.

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