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By definition, Rare Diseases or Orphan Disorders are “life-threatening or chronically debilitating diseases, which are of such low prevalence that special combined efforts are needed to address them.”

They are long-standing, progressive, disabling conditions that require multidisciplinary care.

And as part of the continuous efforts to promote public awareness on Rare Diseases, the Philippine General Hospital (PGH), UP National Institutes of Health (NIH) and the Philippine Society of Orphan Disorders (PSOD) together with the Department of Health (DOH), is pioneering the Care for Rare awareness campaign at the PGH Out-Patient Department.

The campaign runs from October 17 to November 16, 2017.

#CareForRare was inaugurated last Wednesday morning at the PGH-OPD building led by PGH Director Dr. Gerardo Legaspi, Dr. Carmencita Padilla, UP Manila Chancellor and representatives from the Philippine Society of Orphan Disorders (PSOD). A brief media conference followed after the ceremonial ribbon-cutting.

During this month-long campaign, an information table is set up manned by health volunteers who would be giving out informational materials about rare diseases specifically Lysosomal Storage Disorders like: Pompe disease, MPS I &II, Fabry disease and Gaucher disease. Patients can approach these volunteers to inquire about the diseases as well.

The PGH #CareforRare campaign aims to bring national attention and awareness on the impact of rare diseases among people and the ways by which families and communities can help realize the spirit and intention of R.A. No. 10747 or the Rare Disease Law.

The Philippines has achieved a very important milestone when the Rare Disease Act was passed into law last year which seeks to improve the access of patients with rare diseases to comprehensive medical care and to timely health information that would help them cope with their condition.

Here are some reasons why this campaign is very important:

  1. In the Philippines, a disease is considered rare if it affects 1 in every 20,000 individuals or less.
  2. Those afflicted with rare disease or orphan disorders suffer from social abandonment due to lack of existing network of support to aid them.
  3. The nature of rare disease is hardly known as well due to lack of information; and only few medical professionals in the country are aware of these disorders and how to diagnose and address these conditions. Medical help is also elusive under the conditions of the country’s health priorities.
  4. According to the PSOD, there are about 7,000+ rare diseases known worldwide, and only 5% have US FDA-approved treatments.
  5. 80% of these rare diseases are caused by faulty genes that anyone can be carrying without their knowledge.
  6. 75% affect children.
  7. 30% die before the age of 5.
  8. PSOD has registered early this year a total of 319 individuals in the Philippines with rare disease representing 63 rare disorders.
  9. Not all rare diseases are detected by newborn screening.
  10. It is estimated that around 350 million people worldwide suffer from rare diseases.

Public awareness plays a very important part in comprehensive healthcare; and a comprehensive healthcare respects everyone’s right to life. The campaign for national Rare Disease awareness is a shared responsibility and there is a great need to work together for this to be successful.

With PGH’s #CareForRare campaign, both the private and government organizations working behind it are hoping to address the need for effective identification and diagnosis of rare diseases among our country’s population.

To learn more about Rare Diseases, head on to the 2nd floor of the PGH-OPD right now.

Dr. Padilla also mentioned during the media conference that while PGH is the pilot hospital for this campaign, the group has already enlisted the help of 14 hospitals more for this endeavor.

In other related good news, Dr. Legaspi announced that the PGH has been granted by congress a 100M budget for the renovation project of the country’s lead public medical institution’s Out-Patient Department.

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raindeocampo

Writer, Wanderer, Child of God

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