The De La Salle College of Saint Benilde (and SPACE School of Professional and Continuing Education) and Philippine Society for Orphan Disorders Inc. joined hands in battling orphaned disorders this March 28, 2019. For those who don’t know, the PSOD is an NGO support group for persons with rare diseases. Right now, they are representing over 319 patients afflicted with one or more of 63 rare disorders and they hope to be in the forefront of awareness, registry, support for them, assist patients and their families, do policy formulation, legislation, strengthen organizations, help doctors and research, help in making them resilient and make them self sufficient too.This program is called “Care for Rare: Together in Mission.”
Brother Dennis Magbanua FSC, President of DLS-CSB says “As a school, we believe to be more inclusive. We must innovate towards that and we thank all the reps of communities for coming over. We hope to include more of those who have certain diseases to be part of our program in Benilde. Partly, our desire to have 20% with full scholarships is a genius idea. We always talk about being one, we want to bring more students afflicted with rate disease. Part of our CSB dna continues to give opportunities that are flexible, to respond to the needs of PSOD. We look forward for many years of working with you.”
PSOD President Cynthia Magdaraog says “Before signing the partnership, our first MOU declares PSOD to be the central network to sustain and promote individual programs for orphan disorders. To create awareness, to advocate support, access treatment and supportive care, to educate the public about acceptance, give education for gainful employment, improve their way of life and their family life. To support PSOD in implementing their programs, equal rights to life. Students and Faculty already have made efforts since February. Parents are hopefully to also get education so they could provide for the comfort of their patients as well.”
The I AM RARE Scholarship Fund was explained to us by a patient named Juan Benedicto Magdaraog. He says “I was afflicted with a rare disease years ago and the doctor told me I wouldn’t last past 12 years old. I was told to enjoy my life and be happy. The need to strengthen my mind, the difference is education. The ability to go to school in a warm and accessible way in St. Benilde was accepting to people with disabilities. It has opened opportunities, for that I am grateful. It does not mean my life wouldn’t be a miracle for others. I live with purpose, I want the same opportunities to be given to others with rare disease. Today marks something meaningful, I hope patients, their immediate family to be able to have the same education as it is very important in improving their lives. They can go to school that could help them be productive, improve lives of families, with the condition they should also give back. Hopefully it will become a reality to change, to have inclusive developments, and me to also go back to school. I saw how the school looks like now, with that, thank you and I hope in the future we would be able to help a lot of families, to improve their lives.”
PSOD President Cynthia Magdaraog adds “We have potential scholars of the SPACE program. She only got to 2nd year college because of her Osteogenesis. She had to be careful, not move around much because of her very brittle bones. She likes to sing, play guitar, cooking. A foundation has been helping her with her medical needs. She wants to finish college and become productive, she urges people not to judge people by their looks, or their condition. We also have Mich who graduated in BS in Information Technology but never had much opportunities, we also have Ziv who has a rare syndrome with no formal schooling who got right diagnosis at age 11 and wants to be a Chef. Three candidates so far and our criteria is to find a person with strong determination, parents who can support them going in and out of school, hopefully we’ll have them enrolled this coming school year.”
They (qualified scholars) will be going to SPACE, a place to get their skills and go into the workforce. We started developing special programs and make them into a BS degree later on. They are working with corporations as they do training programs. Their goal is to make learning for everyone. They offer hundreds of certificate programs in design and arts, animation, digital media, business programs, marketing management, Hotel and Restaurant management and a whole lot more. They want to be a partner in this effort to provide a second chance for people who need it.
To help with PSOD you may contact them through 661-8935 their site psod.org.ph or visit them personally at UNIT 206 Greenhills Mansion 37 Annapolis Street Greenhills San Juan, Metro Manila.
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