As a person who grew up with a rare disease, I have first hand experience with the challenges that someone in my situation has to face daily. Apart from the health struggles, there are numerous other problems you have to face.
We live in a poor country where support for people with rare diseases is limited. The health care system is inadequate at best. There’s no access to proper diagnosis much less the actual treatments. Government has done so little in the past to address these issues. However I am hopeful that it’s changing. We have seen some support from government agencies although it’s still very lacking but it’s a good step in the right direction.
I was very lucky to have been born into a family with moderate means. My parents are both middle-class and they’ve worked hard to provide me access to healthcare as well as the other necessities I need such as education, food, clothing, etc. Not a lot of patients here in the Philippines are as lucky as I am.
Together with some doctors and other concerned individuals, we put up the Philippine Society for Orphan Disorders to help advocate for patients, especially children with rare disorders.
I am taking this chance to ask you to help us with our cause. Join us as we celebrate the 3rd National Rare Disease Week. We hope that more people become aware with the plight of people suffering from rare diseases. People who don’t have anyone to help them with their struggles.
We hope that you support us in our fight. Either by helping us promote it or better extending your generosity and helping out the patients and the PSOD by donating. Each peso helps in advancing the needs of patients with rare disorders.
Read the about the “3rd National Rare Disease Day”:http://www.psod.org.ph/ver2/news/3rd-national-rare-disease-week-feb-22-29.
The PSOD also joins the international community in celebrating Rare Disease Day on Feb 29, 2012. For more details on Rare Disease Day please visit “www.rarediseaseday.org”:http:www.rarediseaseday.org
Watch the Rare Disease Day video