The Philippine Society for Orphan Disorders (PSOD) is a "non-stock and non-profit organization that was formed to ensure access to health support of children with rare or orphan disorders.
"RARE or ORPHAN disorders are conditions that affect less than 1 in 20,000 individuals. They are long standing, life threatening, progressive, disabling conditions that require multidisciplinary care."
It is very important for us to understand something especially when it is RARE. This becomes a big problem for us Filipinos due to our mentality to only seek consultation when signs and symptoms start to appear. When they don't bother us at all, why bother? Some of the rare disorders are asymptomatic at birth and will only show signs and symptoms when it's already too late.
The Vision of PSOD is "to be the CENTRAL NETWORK for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for individuals with orphan or rare disorders in the Philippines."
Their Mission is "to uphold the primary concerns and welfare of individuals with rare disorders by directly addressing, supporting, and protecting their health and general well being."
You can read more about them at their website: www.psod.org.ph
Like them on Facebook: https://www.facebook.com/pages/Philippine-Society-for-Orphan-Disorders-Incorporated/104066763015596
or Email them @ info@psod.org.ph
Let's build a better future for the RARE because everybody deserves a CARE.
"They deserve a chance in life."
Copyright 2011 Notes on Hobbies | Are you aware of the Philippine Society for Orphan Disorders, Inc.?
Are you aware of the Philippine Society for Orphan Disorders, Inc.? @ http://notes-on-hobbies.blogspot.com/2011/07/are-you-aware-of-philippine-society-for.html
ReplyDeleteyay!
ReplyDeletethanks for posting this ra =)