July 18, 2014
Dear Officers and Members of the Volunteer Youth Leaders for Health - Philippines,
Greetings and congratulations on your 5th Founding Anniversary!
In behalf of the Philippine Society for Orphan Disorders (PSOD), we
convey our deepest gratitude for the nationwide support you have given us for
the past five years in promoting our advocacy.
Over the years, we have felt significant progress in growing awareness and support from the general public and private sectors for our member patient families. Much of this we sincerely attribute to the creative programs you have launched nationwide, most especially during the yearly celebration of the National Rare Disease Week and World Rare Disease Day. The voluntary participation of your members at PSOD’s activities is much appreciated. We are truly so blessed by your partnership.
We are ecstatic that you have initiated and have chosen to launch the
online petition to call for the support of the enactment of the “Rare Disease Act
of the Philippines” at Change.org on this special day, your Fifth Founding
Anniversary. The journey to realize this into law will be long and very
challenging. Your viral support will be very crucial. We truly believe that
hand in hand, working together, this can be realized, and that someday, soon
sustainable access to health support for persons afflicted with rare disease and
their families will be possible.
We wish you success in growing your organization and individual
fulfillment in the laudable work you all do together.
In behalf of our member patient families, the Board of Directors and
staff of PSOD,….MARAMING, MARAMING SALAMAT.
Sincerely,
(signed)
Cynthia K. Magdaraog
President
SIGN NOW. Visit the Online Petition for the Early Deliberation and Passage of a
"Rare Disease Act of the Philippines" within the 16th Congress
Since it's inception in 2009, VYLH-Philippines has been conducting activities designed to increase the public's awareness on the plight and fight of Filipino with orphan or rare disorders. These
Cynthia K. Magdaraog
President
SIGN NOW. Visit the Online Petition for the Early Deliberation and Passage of a
"Rare Disease Act of the Philippines" within the 16th Congress
Persons (mostly children) afflicted with a rare genetic disease are "orphaned" by society. They suffer from social abandonment because of lack of existing network of support to aid them. Medical help is elusive under the conditions of the country's health priority. Because the nature of rare disease (otherwise known as orphan disorders) are long standing, life threatening, progressive and require multidisciplinary care, essential treatment and supportive care likewise require lifelong administration.
Persons born with and afflicted with rare or orphan disorders are a vulnerable and special population. Despite the small population, like any other Filipino citizen, they too have an equal right to life and and equal right to access health support.
The law will put in place a permanent and sustainable mechanism by which the State shall institutionalize a system that is comprehensive, integrative and sustainable, and will facilitate the collaboration of various stakeholders towards the provision of early and sustainable care of every person afflicted with rare or orphan disorders.
