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THE Philippine Society for Orphan Disorders (PSOD) gathered key agency leaders and advocates in a patientcentric. event held last month in Manila to discuss ways on how to address, support and protect people with rare diseases. Leading the discussion were agency representatives from the Department of Science and Technology (DSOT), Department of Education (DepEd), Department of Labor and Employment (DOLE) and PhilHealth joined by patients and their families. With the theme "Easing the Burden of Rare Disease,” the PSOD Patient’s Forum was organized last Dec. 12 at Best Western Hotel La Corona, Manila to discuss the plight of the patients and their needs for medical assistance and how local agencies can contribute to the patients. The forum was not just to help patients with rare diseases, but to also enable a new understanding of the principles behind rare disorders and the development of new treatments. PSOD is a non-profit organization whose mission is to uphold the primary concerns and welfare of individuals with rare disorders in the Philippines. The organization directly addresses, supports and protects the health and general well-being of people with rare disease. Continued on C3 Dr. Carmencita Padilla (2nd from right), Founding Chairman of PSOD, Dr. Jaime Montoya (3rd from right), Executive Director of Philippine Council for Health Research and Development and Cynthia Magdaraog (rightmost), President of PSOD, together with Rare Disease patients during the Easing the Burden of Rare Disease Forum rf------------------------------------------------ Patient's... From C4 According to DOST's representative Dr. Jaime Montoya, Executive Director of Philippine Council for Health Research and Development, promoting research that addresses unmet necessities of people with special needs will help develop government policies that aid this special population of rare disease. “We must help each other to find solutions to help people with rare disease and their families, even if it’s just to reach one objective: understand better the regional and global situation to enhance policies and uplift the lives of our patients,” said Dr. Montoya. On the other hand, Sheena Manuel, Senior Education Program Specialist of DepEd mentioned certain programs and projects to strengthen special education: the establishment of learning resource centers, training of teachers, administrators and supervisors of SPED, provision of technical assistance, health and allied medical personnel, a transition program, monitoring and evaluation, and distance education. Massive job generation is also a possible solution to shield rare disease families. DOLE’S primary program, Dole Integrated Livelihood and Emergency Employment Program (DILEEP) was cited to provide workers with additional income and alternative employment. A According to Eloisa Santos of DOLE, this is DOLE’S contribution to the government agenda of inclusive growth. Moreover, PhilHealth has been working behind the scenes for rare diseases. Dr. Adelina Mesina, Medical Specialist from PSOD shared that PSOD and PhilHealth have been working on health benefit proposals for rare disorder patients. The agency presentation was followed by a video presentation on how mothers are coping with raising children with special needs and the problems they hope can be addressed. The parents also had the chance to ask the agencies questions to provide better understanding of this health condition and how to provide better support for their loved ones afflicted with such disease. To conclude the forum, PSOD President Cynthia Magdaraog gave a heart- warming closing remarks thanking everyone in attendance. Participants joined patients and their families in singing “Family is Love" to officially close the event. The PSOD Patient Forum was successful in giving hope to families to raise their concerns and get access to innovative ideas, alternative learning programs, and medical assistance for rare disease patients. PSOD will continue to focus on patient care, family support, awareness and advocacy. As Dr. Montoya of DOST stressed, “We must all work together in easing the burden of rare disease. It is not rare to care. ”

Children at a young age are bound to encounter new things that will pique their curiosity and interest. As they explore the world around them, it is important that they develop a strong immune system early on especially in a country with an unpredictable weather condition. Together with other factors, a weak immune system may make children more vulnerable to sickness when they go out of the house – either when they go to school or when they play with their friends.

According to the 8th National Nutrition Survey of the Food and Nutrition Research Institute - Department of Science and Technology (FNRI-DOST), four out of five school children suffer from lack of iron, two out of five from lack of zinc, and seven out of ten from lack of vitamin C. This is called micronutrient deficiency. Without adequate intake of these key nutrients, children may become more susceptible to getting sick. To help protect your child from illnesses, here are a few tips to remember.

Prepare them with necessary items to face the erratic weather.
No matter what the weather is, your child must be prepared with the right items when they leave home. Prepare a kit where they can keep an umbrella or a jacket in case of sudden downpours, cap for sunny days, daily sunscreen, an extra shirt when they need to freshen up, and a water bottle to ensure they stay hydrated by drinking the recommended amount of water throughout the day.

Have them practice good grooming and hygiene.
Teach your child to wash his hands regularly and thoroughly to avoid catching and spreading diseases. It also helps to send a bag of personal hygiene essentials like soap, towel, toothbrush, and toothpaste for your kid to use when needed.

Give them balanced meals every day.
Nutritious and balanced meals are critical for a child’s strong immune system. To help you prepare their meals, follow the Pinggang Pinoy guideline in the Nutritional Guidelines for Filipinos developed by FNRI-DOST. This will make sure your child has enough Go, Grow, and Glow foods to provide them the energy and nutrients they need for a strong body.

Provide a glass of fortified milk for them every day.
Aside from balanced meals, make sure your child drinks milk that is fortified with nutrients such as iron, zinc, and vitamin C. Remember to choose milk that has been developed by experts to help fight micronutrient deficiency.

BEAR BRAND® Fortified Powdered Milk Drink has TIBAY-RESISTENSYA Nutrients 100% Vitamin C, 3x More Available Iron and High Levels of Zinc. BEAR BRAND® Fortified Powdered Milk Drink is the only proven and studied milk drink (test conducted in 2016 by FNRI-DOST) developed with FNRI-DOST’s recommended nutrient levels to help fight micronutrient deficiency amongst Filipino Families.

Give your child a glass of BEAR BRAND® Fortified Powdered Milk Drink everyday para ang TIBAY niya, ALWAYS PRESENT!

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