Rare Acts, Rewarding Experiences: VYLH Dumaguete spearheads Rare Projects

DUMAGUETE CITY - For more than ten years, our Dumagueteño volunteers have been active members of the VYLH-Philippines. A University town, and the City of Gentle People, Dumaguete has been the home of youth leaders spearheading activities that have advanced the services of the network. In particular, our volunteers from the city have spearheaded two remarkable RARE projects in the past two years that aimed to promote public awareness and support to the rare disease community. 

Run for Rare Disease

A brainchild of VYLH-Philippines Dumaguete Chapter, the run for rare disease is a step to a more aware community toward unfamiliar  causes such as rare disease support. The rarity of this support in the community seems par to the definition of rare disease, which afflicts 1 in every 20,000 individuals in the Philippines. As health advocates, we hope to fill this gap. 

Dumaguete has successfully organized its very first advocacy run on rare disease on October 28, 2018, with 300 runners from all over Negros Oriental. On its second year this October 2019, a whopping 500 joined in to form part of this worthy cause—a cause that we hope would engage the community to care more for children with rare disease and patients with disabilities.

The event does not only foster community responsiveness toward the advocacy but a call, bit by bit, to advance support for patients with rare conditions, specifically to aid in treatment, therapy, or procurement of essential supplies, in our little way. The Philippine Society for Orphan Disorders is one of the beneficiaries of the event. 

This initiative was made possible through the help of the Department of Health, Central Visayas Center for Health Development; Newborn Screening Center Visayas; Philippine Red Cross, Negros Oriental Chapter; Negros Oriental Integrated Provincial Health Office; Dumaguete City Health Office; Dumaguete City Sports and Development Office; and private partners.

Rare Disease Symposium

With this year’s theme, “Bridging Health and Social Care,” VYLH-Philippines Dumaguete commemorated rare disease week through a special talk on rare disease which was slated on February 1, 2019, at the Audio-Visual Theater of Silliman University, Dumaguete City. 

Health professionals, medical students, and members of the youth comprised the participants of the event. The objective of the symposium was to raise awareness on rare diseases among the youth and health workers, enabling them to become better advocates for these patients who are afflicted with such conditions. Moreover, it also sees to motivate budding and current health workers engaged in community work to assist and campaign for these patients in the community. 

VYLH Visayas cluster adviser, Dr. Barbra Charina Cavan, served as the guest speaker. Dr. Cavan, an expert on orphan disorders, is the first clinical geneticist and one of only two geneticists currently working in the Visayas. She also co-founded the Cebu chapter of the Philippine Society for Orphan Disorders, a support group for children with rare disease. 

The Philippine Nurses Association Negros Oriental Chapter, Silliman University College of Nursing, and Foundation University College of   Nursing all took part in making this event a success.

The involvement of various sectors is undeniably a gain for the network and its causes. These small ripples of kindness, together, create big waves of change. Through our joint efforts, we will be able to reach more lives and positively change them for the better.

Rare Acts, Rewarding Experience—RARE!

Written by Floyd Edrea, RN (Pioneer)
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Visit the Care for Rare Dumaguete Facebook Page for additional photos and project updates.