PHL joins world in celebrating Rare Disease Day

March 1, 2014 10:12 am 

By Azer N. Parrocha

MANILA, Feb 28 (PNA) — Over 200 Filipinos, mostly children, are afflicted with over 20 rare disorders, according to a study by the University of the Philippines National Institutes of Health (UP-NIH).

The nature of rare disorders are long standing, life threatening, progressive and require multidisciplinary care, available therapies and food supplements likewise lifelong administration.

With it being rare, those affected are “virtually orphaned” by the society through social abandonment and lack of support and aid.

Such rare diseases include Apert Syndrome, Galactosemia, Homocystinuria, Lowe Syndrome, Muscular Dystrophy, Pompe Disease and other diseases which affect only a small population.

It appears early in life and studies show that only about 30 percent of children with rare diseases reach the age of five.

Although in the past it was not given much attention in the country, that insight is slowly changing as non-profit organization, Philippine Society for Orphan Disorders, Inc. (PSOD) is pushing for programs to raise its awareness.

One such event happened dusk of Friday where the Philippines joined the world in celebrating the 7th Rare Disease Day at the SM Mall of Asia (MOA) globe area in a simple candle-lighting ceremony.

According to the PSOD, the event draws a message to the Filipinos, especially children afflicted with rare disorders and their families that they are not alone in the struggle for a better quality life

“This is the day where countries all over the world conduct a high visibility campaign for rare disease,” Cynthia Magdaraog, PSOD President said in an interview.

She said that over 70 countries around the world join the campaign which started in Europe in 2008. It is celebrated every 28th of February.

“It is important for parents to early identify (if their child is inflicted with a rare disease) so that treatment given,” Magdaraog said.

“In this way, they can live productive and normal lives,” she added. “It really has helped early identification and treatment.”

The theme this year is “Joining together for better care” which aims to reach out to more people and call for support for better care.

It is organized by PSOD, Chili Grass, through the valuable sponsorship of SM MOA, SM Program on Disability Affairs, Photography With a Difference (PWD), Canon Marketing Philippines and Genzyme, a Sanofi Company. (PNA)



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