The Department of Social Welfare and Development (DSWD) enjoins the public to support the observance of the 8th National Rare Disease Week (NRDW) on February 22-28 as declared by Presidential Proclamation No. 1989.

Signed on February 8, 2010, the proclamation aims to raise awareness on rare diseases and their impact on the lives of those affected.

The campaign also aims to seek the support of policy makers, researchers, health professionals, civil service organizations, and other development workers to help in putting focus on this health issue which greatly affects the socio-economic status of the patient and their families.

Under Republic Act No. 10747, otherwise known as the “Rare Diseases Act of the Philippines,” rare disease refers to disorders such as inherited metabolic disorders and other diseases with similar rare occurrence as recognized by the Department of Health (DOH) upon the recommendation of the National Institute of Health (NIH).

More often than not, families with a member afflicted with a rare form of disease experience financial, mental, and emotional difficulties as they face the health problem.

The passage of the Rare Diseases Act is considered a milestone in the campaign.  Also, funding for researches on rare diseases have also increased over the years. However, more needs to be done.

The observance of the NRDW is also an opportunity to call on researchers, policy makers, academe, and other concerned organizations to conduct more studies and help in raising awareness regarding rare diseases.

In support to the NRDW, the DSWD will participate in the #CareForRarePH Social Media High 5 campaign, which constitutes the following activities: Like the National Rare Disease Week Facebook Page;​ support the NRDW Thunderclap;​ customize the Department’s profile photo with a twibbon designed for the NRDW​;​ upload “Raise your Hands for Rare” photos wherein photo, selfie or groupie shots with hands’ raised to call for better support for Filipinos affected with rare diseases; and​ use #CareForRarePH in its posts and status updates.

​ For DSWD Secretary Judy M. Taguiwalo, having a rare disease is not just a health problem but it becomes a psycho-social concern.

“Our social workers are ready to provide psycho-social support to families with members who are sick with rare diseases.  It is important to also address their psycho-social needs to help them cope with the situation that they are going through,” Sec. Taguiwalo said.

Persons with rare diseases are PWDs

The welfare official also pointed that under Article IV of RA 10747, it is stated that persons with rare disease are considered to be persons with disabilities (PWDs). This is also in accordance with Republic Act No. 7277, as amended, or the Magna Carta for Disabled Persons.

“SEC. 11. Rights and Privileges of Persons with Rare Disease. — The appropriate national government agency shall ensure that they are accorded the same rights and privileges as PWDs, to wit:

(a) The Department of Social Welfare and Development (DSWD) shall provide assistance to persons with rare disease to ensure that their social welfare and benefits provided under Republic Act No. 7277, as amended, or the Magna Carta for Disabled Persons, are granted; and

(b) The Department of Labor and Employment (DOLE) shall adopt programs that promote the availability of opportunities for work and employment of able-persons with rare disease.”

“What we want is to promote the interest and welfare of persons with rare diseases and PWDs so they can receive all the assistance they need from the government and its agencies. There is no denying the best way to gauge any society’s progress and development is the way the needs of its most vulnerable members are addressed.  Health concerns are among the most important issues to many Filipinos who, in their poverty, are unable to secure treatment. We hope to remind all our partners in the national government and in the private sector to implement mechanisms and programs to help those who have rare diseases and are considered PWDs,” she said.

The Secretary also enjoins every Filipino to learn more about rare diseases so that timely, and appropriate preventive and/or remedial measures can be done. ###