Rare Disease Week PDF Print E-mail
Written by PSOD   
Friday, 01 March 2013 11:27

 

‘Rare disorders without borders’

 

Living with rare disease is difficult not only for the patients but for their families as well.

 

In the Philippines, rare disease has yet to be included in the government health agenda. The challenges—which include access to proper and timely diagnosis and treatment/intervention, information, specialists, and healthcare and social services—are magnified several fold for a Filipino parent with a child with rare disease compared to those in the EU, US, Canada, Australia, Taiwan, Japan and South Korea.

 

Common challenges the families of patients with rare disorders face include lack of access to correct diagnosis and referral, lack of awareness and information, lack of appropriate health care and infrastructure, lack of access to treatment and management, burden of financing treatment and/or proper management is with the family, uncertainty of sustained donor support and that rare disease is catastrophic to most families

 

National Rare Disease Week to promote greater awareness

Presidential Proclamation No. 1989 declares the last week of February of every year as the “National Rare Disease Week”. The proclamation underlines 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. It 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 instill awareness among the public about rare diseases to generate full support for the special needs of children affected by rare diseases from both private and public sectors.

 

Here in the Philippines, the Philippine Society for Orphan Disorders, Inc. (PSOD) and the Institute of Human Genetics of the National Institutes of Health, University of the Philippines Manila, in partnership with organizations and individuals who supports the advocacy, have taken the lead in the awareness and policy campaign for rare disorders as well as in undertaking all viable means of generating a more sustainable aid for the care of patients.

 

2013 theme: ‘Rare Disorders Without Borders’

Eurodis, the Europen alliance of patient organizations for rare disease, takes the lead in mobilizing the international community to conduct local awareness initiatives. In 2012, 63 countries joined the campaign, including the Philippines.

 

This year’s theme for the World Rare Disease Day and the National Rare Disease Week (NRDW) is RARE DISORDERS WITHOUT BORDERS. According to Eurodis, “Fighting diseases which affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation. The theme for 2013 reminds us that looking at rare diseases from an international perspective is particularly important, in terms of research, health policy and for the millions of patients and families throughout the world who can break out of their isolation though a vast international network of solidarity.”

 

Here in the Philippines, the theme is relevant in at least two areas: (1) that many of the Filipinos with rare diseases are struggling not just against the physical limitations but also against the perceptions of the people around them and of the society at large—that because they have debilitating illnesses, they can do nothing and (2) that because they are few in numbers and the cost of caring for them is high, they cannot be a priority in terms government support.

 

Appeal for the inclusion of rare diseases in the Universal Health Program

On the occasion of the 4th NRDW, PSOD reiterates its appeal to the government for support. Persons born with and afflicted with rare or orphan disorders are a vulnerable and special population. Despite their small population, Filipinos afflicted with rare disease must also be ensured with better access to health through the inclusion in the DOH’s Universal Health Agenda as well as the Philhealth under the catastrophic illness program on the basic premise that ‘nobody is left behind’ and on the basic right to life.

 

Better access to health services and health coverage will reduce out-of-pocket spending of the family for the medical needs of the patient and perhaps eliminate the catastrophic expenditures that drive a family to poverty—allowing to channel the much needed earnings to their other day-today needs. The parents—the primary caregivers of the patients—can also be more productive. Patients who are diagnosed and treated early enough can live normal lives and be productive as well.

 

‘Wear That You Care’ campaign

On Feb 22, PSOD is launching the Philippine ‘Wear That You Care’ campaign enjoining the public to wear advocacy ribbons made out of blue denim materials and to wear ‘maong’ pants on Feb 22-28, particularly on the 28th as the World Rare Disease Day. Wearing the ribbon is a show of support for the Filipinos fighting rare diseases and a call for government inclusion of rare diseases in its health programs.

 

Individuals and organizations are encouraged to take a photo of them wearing the blue denim ribbons and to post the photo on the Wear That You Care For Rare Philippines Facebook page.

 

 

The project is an international campaign inspired by the Global Genes Project’s Wear That You Care™ which encourages people to wear Blue Denim Genes Ribbon™

Contact: Cynthia Magdaraog/Karen Panol

Tel No: (02) 661-8935 | Mobile: 0922-8008783

Email:  This e-mail address is being protected from spambots. You need JavaScript enabled to view it / This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Website: www.psod.org.ph

 

 

Last Updated on Wednesday, 24 April 2013 12:22
 
Children’s Mural Paintings Jazz up the CWC 37th Year Anniversary PDF Print E-mail
Monday, 17 December 2012 12:54

The Council for the Welfare of Children (CWC) marked its 37th year anniversary on December 10, 2012. CWC, created by virtue of Presidential Decree 603, otherwise known as the Child and Youth Welfare Code is a government inter-departmental body mandated to monitor and evaluate the implementation of policies, programs and services relative to the welfare and protection of children.

The anniversary celebration was graced by a mass officiated by Fr. Royce Quintillan of Sta. Teresita Parish Church, Quezon City. This was followed by a blessing and unveiling of mural paintings of the CWC perimeter fence.

Headed by CWC Executive Director Brenda S. Vigo, the celebration was observed with a simple program. This gathering was joined in by some partners from government and non-government organizations. Guests who also shared their short messages of inspiration were Professor Danilo Santiago of UST College of Fine Arts & Design, Director Rosario de la Rosa of KBF, Col. Theresa Cid of PNP, Ms. Daisy Atienza of NCCT and young artists- Romnick Toledo, Youth Representative to the CWC Board and Miguel Uy of UST Art Students’ Association representative.

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The mural paintings were the works of child artists from VIDES headed by Sr. Josefina Carrasco with the inspiration from UST Professors and Students of College of Fine Arts and Design. The event was also participated by members of the Batang Ina Core Group composed of the Department of Health CHD-NCR, PAMACQ, Hope for the Youth Foundation, Inc., Save the Children and Women Health Philippines.

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For further inquiries, please contact:

Ms. Denia S. Gamboa/Ms. Ma. Edna R.L. Estal, Public Affairs and Information Office, Telephone No. 7811039 local 1005/1006.

 

Last Updated on Wednesday, 24 April 2013 12:22
 
More than 6,000 Children joined the 20th National Children’s Month Celebration Kick-Off Event PDF Print E-mail
Wednesday, 10 October 2012 15:04

On October 1, 2012 at the San Andres Sports Complex, Malate Manila, the Council for the Welfare of Children (CWC) led the opening of the month long celebration of the 2012 National Children’s Month with the theme “Bright Child ay Siguraduhin, Responsableng Pamamahayag ay Palaganapin.” Ms. Chacha Canete of Goin’ Bulilit and Mr. BJ “Tolits” Forbes, the Bright Child Jr. Ambassador as the master of ceremonies inspired the children with their energetic presence.

CWC Executive Director Brenda S. Vigo with Mr. Ruperto S. Nicdao, Jr., President of Kapisanan ng mga Brodkaster sa Pilipinas (KBP), Executive Director Frank Rivera of the National Council for Children’s Television (NCCT), Atty. Jonathan Presquito, Chief Legal Officer of the Movie and Television Review and Classification Board (MTRCB) joined in force to make the activity a very special day for children. The event was highlighted with the singing of community songs “Narito Munting Puso” and “Bawat Bata” which was led by Chacha.

Children of Manggahan Elementary School Students of Pasig City also rendered a special performance for the national anthem entitled “Dakilang Lahi” and immediately followed by the invocation rendered by the Voice of VIDES entitled “Aking Dasal.” The Kick-Off activity featured “BATA! BIDA KA” with the superb talents showcased by the children from Voice of Vides with their songs “Babae Ako” and “Disiplina, Hindi Parusa”; “Sampung Karapatan at Awit ng at sa mga Bata by Philinc; Theater presentation by ERDA Sabana children; and, Rondalla Rendition by Abot Kamay of Pasay City.

Likewise, the crowd was filled up with upbeat messages from the children themselves, namely Ms. Norisa Sabirin and Mr. Joshua de Leon, sectoral representatives of National Anti-Poverty Commission-Children Basic Sector and also, Ms. Shiela May Sendin of Quezon City High School and Mr. Mark Ian Quiban of Jose Abad Santos High School.

The event was participated in by the national government agencies; non-government organizations; some media partners; teachers and school children from Manuel A. Roxas, Villamor, Manila Science, Araullo, and Manila High Schools; Aurora A. Quezon, J. Lukban, Epifanio Delos Santos, and F. Ma. Guerrero Elementary Schools; children, parents, staff, and Day Care Workers of Manila District Welfare Office, students from University of Santo Tomas (UST) and La Salle Zobel, Girl Scout of the Philippines, Vice Mayors League of the Philippines, and some faith-based organizations.

Please visit the CWC website www.cwc.gov.ph and facebook “Bada Bida Ka Community” for a series of exciting activities for the month of October.

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For more details, please contact Ms. Denia S. Gamboa/Ms. Ma. Edna R.L. Estal, Public Affairs and Information Office, Telephone No. 7811039 local 1005/1006.

Last Updated on Friday, 12 April 2013 09:42
 
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