It is not common to see or hear about Filipinos with illnesses that are unheard of. But not because they are uncommon, they do not exist. In fact, these illnesses fall under the category “rare diseases”.
The Philippine Society for Orphan Disorders (PSOD) defines rare diseases as those conditions that affect one in 20,000 individuals. Rare diseases are also called “orphan disorders” because those afflicted are considered orphaned by the society. Orphaned in such a way that these Filipino patients do not get the appropriate medical help due mainly to lack of understanding and capabilities of medical facilities and practitioners to cure these diseases. Even the cost of medication is high that many families couldn’t afford the available treatment.
Rare diseases are progressive and long-standing and are usually hereditary or have developed during pregnancy of mothers. Those who have these diseases may appear normal but could develop signs or symptoms later in life. Among the identified diseases by under this category are:
· 6 Pyruvoltetrahydropterin Synthase Deficiency
· Autoimmune Chronic Active Hepatitis
· Gaucher Disease
· Hemophagocytic Lymphohystiocytosis
· Heterozygous Cystenuria
· Holocarboxylase synthase deficiency
· Homozygous Cystenouria
· Lowe Syndrome
· LSD – Multiple Sulfatase Deficiency
· Maple Syrup Urine Disorder
· Methyl Malonic Aciduria
· Moebius Syndrome
· Niemann pick
· Osteogenesis Imperfecta
· Pompe Disease
· Respiratory Chain Complex/Deficiency
· Tay Sach’s Disease
· Urea Cycle Defects
About 7,000 rare diseases have been identified worldwide and they are mostly caused by genetic defects and environmental exposure during pregnancy or later in life. In the Philippines, there are over 200 Filipinos, mostly children, afflicted with over 20 rare disorders. (IHG-UPM)
There have been initiatives from international organizations and researchers to study and finally find a possible cure for these disorders. Even in the Philippines, a number of medical professionals have dedicated their time and efforts in undertaking researches and clinical studies that would shed light in the understanding and cure of rare diseases. For the past 20 years, the Institute of Human Genetics (IHG) of the University of the Philippines’ National Institute of Health has been spearheading awareness advocacies in the country. With the aid of foreign and local donors, pharmaceutical companies, and non-government organizations, medical practitioners have gained deeper understanding and developed other possible treatment of rare diseases.
In June of 2006, The Philippine Society for Orphan Disorders, Inc. (PSOD) non-profit organization was organized to continue the efforts of these doctors to ensure sustainability of medical and financial support of patients with rare disorders. With the help of IHG and its partner organizations and donors, PSOD aims to be the central network for the advocacy and effective coordination of all viable efforts to sustain a better equality of life for individuals with orphan or rare disorders in the Philippines. (www.psod.org.ph)
This fourth week of February is “National Rare Disease Week” and the commemoration has been going on for three years already. It was Presidential Proclamation No. 1989 signed in February 2010 that paved the way for the yearly awareness advocacy of these diseases. The proclamation underscores the role of the State in protecting and promoting the right to health of the people, including the right of persons suffering from rare diseases to have access to timely information and adequate medical care. PP 1989 also underscores the urgent need to conduct a national information campaign in order to create awareness among health professionals about the nature and management of rare diseases and to instill awareness among the public about rare diseases to generate full support for the special needs of children affected by rare diseases from both public and private sectors. (www.psod.org.ph)
This year’s 3rd National Rare Disease Week carries the theme “Solidarity: Rare But Strong Together” and is spearheaded by the PSOD. The occasion is also a call for involvement on the part of all stakeholders such as relevant governmentagencies, healthcare institutions, local government units, non‐governmentorganizations, the media, and other private and public institutions in the campaign.
Other activities that would highlight the celebration are as follows:
1. 11 Feb 2012)
Part 1 on a workshop series to help improve financial independence of families of patients with rare disease in partnership with Zonta Club of Fort Bonifacio-Taguig. Personal Financial Planning aims to help the participants plan their expenditures and budget according to fund flows. The workshop will deal on why plan, why budget in spite of meager/no resources and how to save to reach target amount for specific period. Expected output is a financial plan.
2. 18 Feb 2012)
Part 1 of workshop series to help improve caregiving skills for rare disease patients in home setting beginning with parents and caregivers of MPS patients. Organized and implemented by the Philippine Society for Orphan Disorders, Inc. in partnership with Trinity University of Asia-St. Luke's College of Nursing.
3. 22 Feb 2012)
Nationwide awareness campaign for the 3rd National Rare Disease Week (Feb 22-29) and 5th World Rare Disease Day (Feb 29). Initiated by the Philippine Society for Orphan Disorders, Inc. and with the support various private and public agencies/organizations.
4. 22 Feb 2012)
The “Adopt-A-School Campaign” campaigns aims to encourage local volunteers to present the advocacy on rare diseases among high school students and faculty. The activity also aims to collect signatures in support of the Rare Disease Act of the Philippines among the events beneficiaries. This is a nationwide initiative by the Volunteer Youth Leaders for Health (VYLH) - Philippines. Visit VYLH website for more info.
5. 25 Feb 2012)
A preliminary workshop on basic counseling for representatives of various rare disease patient support group within the network of the Philippine Society for Orphan Disorders, Inc. Organized in partnership with Eduk, Inc., Sanghabi and Padayon SSEAYP 2004 (SSEAYPAA).
6. 3 Mar 2012)
Workshop on Managing Personal Finances (Part 2 of a series) for Parents of Patients with Rare Disease; in partnership with Zonta Club of Taguig-Fort Bonifacio Entrepreneurship Workshop could be a step in attaining the self- help initiatives thereby opening opportunities for economic gains. It is aimed at participants to open their minds to think of entrepreneurship as self development, improving the lives of the families through income augmentation; and to develop the entrepreneurial traits of industriousness, innovation and integrity. The workshop will imbibe to those who are not predisposed to entrepreneurship the entreprene...
7. 10 Mar 2012)
Worry-free day for Cornelia de Lange Syndrome and Moebius Syndrome patients and family members in partnership with PSOD's Victory Church network and friends
8. 17 Mar 2012)
Workshop on Savings and Investment (Part 3 of a series) for Parents of Patients with Rare Disease; in partnership with Zonta Club of Taguig-Fort Bonifacio Workshop on Savings and Investment Options is aimed at making the participants think resource optimization. A menu of options shall be discussed to make their money grow and work for them. The workshop will give the participants insights on the wise use of resources.
For more information about these activities, you may visit www.rarediseaseday.org.
With the concerted effort of government, non-government, private sector, and concerned individuals, the stigma attached to those afflicted with rare diseases will finally be erased as wider and deeper understanding, treatment, and support could finally develop from this national to international and cross-cultural effort of spreading awareness and conducting researches about these arcane diseases.