Rally for RARE Disease

Friday, February 10, 2012

Photo courtesy of PSOD

February 29 is World RARE Disease Day. 

A whopping 7,000 rare diseases have already been identified affecting more that 350 million people worldwide. According to The Global Genes Project, 75% of those with RARE disease are children.

On the global front, The Global Genes Project has been raising awareness about RARE disease since 2010. Mom Bloggers for Social Good is an active ally in this effort to raise awareness. Reaching out to more people means getting more support, and hopefully, sufficient funding for the development of treatments and cure.

Please help us in spreading the word about RARE disease by doing the following:

1.)    Join the “1 Million for RARE” movement and like the
        Global Genes Project Facebook  page: 1 Million for RARE

2.)    Tweet @GlobalGenes. Use #1Mil4RARE

3.)    Forward to a friend!

In the Philippines, the Philippine Society for Orphan Disorders (PSOD) is also seeking for help for those affected by RARE disease. It is the sentiment of the people behind PSOD that people with RARE disease are orphaned by society because very little is known about their condition. Since 1991, a group of doctors from the University of the Philippines, National Institute of Health, and Institute of Human Genetics have been dedicating their time attending to patients, and have also been continuously undertaking clinical trials to find ways to improve the health of Filipinos affected with the difficult condition.

Some of the rare diseases in the IHG-PSOD registry are:  6 Pyruvoltetrahydropterin Synthase Deficiency, Holocarboxylase Synthase Deficiency, Maple Syrup Urine Disorder, Mucopolysaccharidosis, and Tay Sach’s Disease, to name a few in a long list of diseases we may never have heard of before. You can learn more about them through PSOD.

There are patients who are appealing for help for their medication, treatment, life-saving therapies and medical equipment.

Spread the word by forwarding this article to everyone you know. Please help save a life today.




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