Last month, I had the pleasure and honor of being invited into the home of Philippine Society for Orphan Disorders President Cynthia Magdaraog for a very important social media project. Although I have been a social media specialist for two years already, this project has got to be the most ambitious yet the most “worth-it.” The goal is to gather 500,000 signatures to rally lawmakers in passing Senate Bill 3087 or the Rare Diseases Act of the Philippines. All these signatures should be in by February 26, 2011, in time for the World Rare Diseases Day.
It’s a noble cause and I believe everyone should be a part of it. That’s why, together with the PhilippineBeaches.org fan page, we are pushing for this campaign the hardest we can. Please take some time to give us your signature. You have no idea how much of a difference your signature can make.
Every baby is truly a bundle of innocent bliss and joy. He is a picture of hope and promising future. However, he could be one in every 20,000 babies—although appearing normal at birth—will, at some time, develop a disorder counted among the group of dreaded diseases called rare or orphan disorders. These are long standing, life threatening, progressive, and disabling conditions that require multi-disciplinary care and which afflicts babies from all social and economic classes.
But since some of these disorders are yet to be fully grasped and understood by medical science, babies afflicted with these medical conditions, often times, are not given immediate attention due to delayed and incorrect diagnosis—subjecting them even more to serious health risks and consequences. Still, babies fortunate enough to have been diagnosed properly and promptly faced yet another serious challenge: the high cost of treatment and medication well beyond the reach of most Filipino families. But for the few who may have the capacity, optimal care is still elusive due to the scarcity of specialists and facilities that can handle their special needs.
Since these disorders affect only a small percentage of the population, very little attention is spared by the government, the private sector and the public at large. Very few doctors specialize in this discipline. Pharmaceutical companies tend to overlook the manufacture of products for these conditions because of the small or even zero profit potential. And the genetic nature of these disorders makes research painstakingly long and difficult.

Consequently, patients with rare disorders have been isolated from the health sector and the society. As such, they have been considered as social and medical orphans.
You can help by filling out the form below. Accomplishing the form is considered a signature.
You can also show your support by forwarding this link to your network of family and friends.
http://bit.ly/500Ksignatures
For more info, visit www.psod.org.ph or email info@psod.org.ph.
Viewed 1358 times by 471 visitors this month






































Responsibility Comes with the Territory
image courtesy of www.uproxx.com
Remember this post in which I enumerated the types of people that annoy me the most? Well, let add some more to it.
One of the things I hate the most is neglecting responsibilities. Many times, we find ourselves under a certain obligation. You see not all obligations require written agreement or contracts. Most of the time, different scenarios impose obligations on you. These are responsibilities that are not written, but courtesy dictates that we honor them.
Confused? Well, let me enlighten you with these examples, which I believe many of you have experienced.
Don’t you just hate it when you ride a jeepney and the person seated closest to the driver refuses to get your fare to pass on to the driver? Others would do it but would give you an irritated sneer.
I have a couple of friends who do refuse to touch other people’s coins in the jeepney. They say it’s dirty. As if the coins in their pockets aren’t!
God, if you’re taking a jeepney, it is a given that you are obligated to pass other people’s money to the driver, especially if you’re sitting right behind him. Agree?
Read more
Viewed 1354 times by 377 visitors this month
12 Comments