By Jose Guillermo Garcia
Pasay City – On July 6-7, 2024, the 1st Metabolic Camp was hosted at Microtel by Wyndham in Pasay City, coinciding with the 18th founding anniversary of the Philippine Society for Orphan Disorders, Inc. (PSOD). Campers and their parents from various parts of Metro Manila and nearby provinces, including Laguna, Batangas, Quezon, and even Mindoro, attended the event.
This camp was organized by PSOD in collaboration with the Institute of Human Genetics (IHG). Initially conceptualized the previous year, the camp aimed to raise awareness for persons with rare diseases.
About PSOD and IHG
PSOD was founded by Dr. Carmencita Padilla to address the long-standing, life-threatening, and progressive nature of rare disorders that require multidisciplinary care. Due to the high cost and accessibility of necessary therapies and supplements, PSOD, a non-profit organization established in June 2006, continues efforts to ensure sustainable medical and financial support for patients with rare disorders. PSOD’s mission is to find resources for individuals with rare diseases through various programs and services, including patient care and family support.
The Institute of Human Genetics (IHG) began as the Medical Genetics Unit at the University of the Philippines College of Medicine in 1990 and became part of the National Institutes of Health – University of the Philippines (NIH-UP) in 1999. IHG is now the largest provider of genetic services in the country, housing a clinical genetics unit and four laboratories that offer diagnostic and research services.
Event Highlights
The camp, aimed at raising awareness for over a thousand rare diseases, featured educational activities and games for children diagnosed with conditions like Maple Syrup Urine Disease (MSUD) and Phenylketonuria (PKU). Parents were shuttled to Manila Tytana Colleges for a cook-off event, where they prepared meals under the guidance of chefs and students. The children’s meals were meticulously calculated to meet their dietary needs, as directed by their metabolic pediatricians.
The event continued with games and learning sessions, culminating in an awards ceremony for participants and organizers. A Zumba class for parents and organizers was held before the event concluded with the distribution of packed lunches.
Acknowledgments
The event was provided free of charge, including hotel accommodation, food, transportation, and reimbursements for gasoline and toll fees. A heartfelt thank you to PSOD, IHG, and their sponsors for making this event a success. The camp fostered new friendships among the children and offered valuable support to the parents.
For more information and support, visit the PSOD website or call (632) 8526-1725, (632) 8536-7006, (632) 8536-7002. You can also donate to PSOD through their website.
Credits:
Special thanks to Mayo Clinic for PKU definition. NHS.UK for MSUD definition. You can check other websites to know more better about other rare diseases.
Credit to PSOD and IHG website for some of the details regarding their history and background. Until the next Metabolic Camp!
Acknowledging Nutricia Phils., in supporting PSOD in this initiative. Thank you!