A Rare Experiment

Rare Diseases affect hundreds of thousands of people all over the world including their familes and people around them.

My family and I are part of the group of people who everyday battle constantly with a rare disease. I suffer from Pompe disease. Yet, despite the hardships we’ve been blessed and somehow was able to get by.

Not may people are as lucky. There are countless patients who have no access to treatment or simple medical diagnosis because they don’t have money or the means to get care. Apart from that, there’s little that’s being done to combat rare diseases.

In our country, there’s virtually no resources allotted to helping people who suffer from rare diseases.

My family and I, together with well meaning friends and partners have decided to make it our cause to raise awareness and look for ways to help people with rare diseases.

February 28 is Rare Disease Day. This year will be the fourth day that it will be celebrated. Spear headed by the EURORDIS and organized together with rare disease national alliances from various countries all over the world, Rare Disease Day’s goal is to create awareness for rare diseases as well as the millions of people that are affected by them.

The Philippines is celebrating not only Rare Disease Day but the 2nd National Rare Disease Week. The last week of February has been proclaimed through Presidential Proclamation 1989 as National Rare Disease Week.

The Philippine Society for Orphan Disorders which I am a patient advocate for is trying our best to create as much awareness and buzz for Rare Disease Week. Due to our limited resources we can’t afford big publicity or marketing campaigns to promote Rare Disease week. So I thought of doing an experiment.

I want to see if I, together with your (whomever reads this) help can use the power of the internet and social media to reach Steve Nash.

Steve Nash in the past has shown support for his friend Simon Bell. Simon suffers from Hunter Syndrome or MPS II, a rare disease. From what I know and have heard, Steve Nash is quite a nice guy. I want to get a message to him and ask him, if he can just record or give a message of support for people, especially children who are suffering from Rare Diseases here in the Philippines. I know that this simple message from Steve will generate a lot of buzz here in the Philippines and create the much needed awareness for Rare Diseases.

So please help me, get this message across. If you have Twitter, please post a link to this post in hopes that it will eventually reach Steve Nash. You can also tweet him at @SteveNash and hopefully he’ll see this post. If you have Facebook, please post this on your status or wall as well.

This might seem crazy but hey, we’ll never know until we try. If it reaches him and we get a message out of it then fantastic. If not, then I haven’t lost anything. In fact every person that reads this is one more person that knows more about Rare Diseases. That’s a victory already.

If you want to help people in the Philippines who have Rare Diseases please visit our web site at “www.psod.org.ph”:http://www.psod.org.ph or send me an email at juan (at) psod (dot) org (dot) ph. There are various ways you can help. We have a petition going on to ask our law makers to pass the Rare Disease bill, you can make a donation towards the Endowment Fund we’re setting up to help support the treatments and medical needs of patients with Rare Diseases. A whole lot of things.

So please, please, please, help me with my experiment. Please pass this on to others.

Remember Feb 21-28 is the 2nd National Rare Disease Week here in the Philippines and February 28 is the international Rare Disease Day. Check it out at “www.rarediseaseday.org”:http://www.rarediseaseday.org.

Let’s do this!