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.
For more info, visit www.psod.org.ph or email firstname.lastname@example.org.
Here are some other ways to help.
Volunteer your TIME and TALENT
PSOD needs your help to achieve its goal of initiating viable efforts to sustain a better quality of life for the Filipino patients with orphan or rare disorders.
- ORGANIZE CAMPAIGNS for awareness on rare diseases and signature campaign in support of a Rare Diseases Act of the Philippines in institutions and organizations;
- CONTRIBUTE ARTICLES for our newsletter and website, or help us tap the tri-media, to feature the different disorders, the patients and their families, the network of partners and friends who extend their support to care for rare;
- ASSIST IN THE ACTIVITIES under the Patient and Family Welfare Program like the family forum, family support, medical mission, as well as special activities (i.e. movie screening, fun run, concert, auction, merchandising) to generate awareness and much needed resources/funds;
- HELP EXPAND OUR NETWORK of partner organizations and individuals thru linkages for Awareness and Advocacy, Patient and Family Welfare and Resource Generation/Fundraising;
- INITIATE A FUNDRAISER to help sustain PSOD and its programs/activities.
Donate to the EMERGENCY MEDICAL FUND
PSOD has created an Emergency Medical Fund for its patient beneficiaries. They need your help to give them a chance for a better quality of life. We appeal for support for a child’s treatment and medical needs.
THE EMERGENCY MEDICAL FUND
Every so often, PSOD receives appeals from parents seeking assistance for medication and life-saving treatment immediately needed by their child. The Emergency Medical Fund subsidizes:
1. Diagnostic tests, confirmatory tests and tests to monitor progress of the diseases.
2. Short-term support to manage complications arising from the rare disorder (i.e. hospitalization, medications, treatment, therapy)
3. Acquisition of supportive devices or equipment (i.e. CPAP, wheelchair, hearing aid)
Any amount you may choose to donate will help us provide these medical needs necessary to manage their disorder.
For more information, please contact Karen Panol, PSOD Project Manager, at telefax (02) 7256519, 0922-3602337 or email@example.com.