National Rare Disease Week unites stakeholders and youth orgs for rare disease awareness

With the theme, “Bridging health and social care”, rare disease advocates, patients, families, and youth leaders joined together in the annual observance of National Rare Disease Week (NRDW) 2019 last February 22-28, 2019.

This year’s NRDW was launched with the Philippines’ participation to the Second High-level event of the NGO Committee for Rare Diseases and Rare Disease Day 2019 Policy Event held at the United Nations Headquarters in New York City, USA last February 21 (February 22, PHL Time). PSOD President Mrs. Cynthia Magdaraog represented the country and PSOD as she shared the progress done in the Philippines on integrating rare diseases to the National Health System. She also updated the panel on the salient features of the PHL Rare Diseases Act and the recent enactment of the Universal Health Care Act.

On the other hand, a “Worry-free” weekend for children with rare disease was also organized this year through the support of SM Cares and Asian Medical Students Association – University of Santo Tomas. Fun-filled activities such as ice skating and bowling were held at the SM Mall of Asia, followed by a day in the indoor theme park Kidzania Manila last February 23 and 24. In the latter, UST medicine students assisted the children as they visit the theme park in addition to sponsoring entrance ticket costs.

During the week, PSOD was also invited for a radio-tv guesting in UNTV’s Serbisyong Kasangbahay. PSOD Program Officer for Patient and Family Welfare Ms. Janet Francisco served as resource speaker. GMA7’s Reporter’s Notebook also aired an episode on children with rare diseases in time for the observance of NRDW.

In social media, campaign supporters were united through the use of the campaign hashtag, #CareForRarePH, and the international hashtag #ShowYourRare. The launch of the PSOD video explainer on rare diseases and its work as a patient support organization became the highlight of the week through the video sharing campaign done in Facebook. More than 30,000 social media users were reached by the campaign during the whole duration of NRDW 2019.

Photos of activities done by partner youth organizations were compiled in this year’s NRDW media album posted in the National Rare Disease Week Facebook Page [LINK].

In addition to our partner youth organizations, the campaign was also supported by the Volunteer Youth Leaders for Health – Philippines, Institute of Human Genetics, NIH-UP Manila, Department of Pediatrics-PGH, Newborn Screening Centers (NSC) North Luzon, Central Luzon, NIH, and Mindanao.

In closing this year’s NRDW, a forum on basic financial management, livelihood opportunities, and psychosocial care was held at the De La Salle-College of Saint Benilde School for Professional and Continuing Education (SPACE) last March 2, 2019. The event was attended by parents and caregivers of rare disease patients. #

List of participating partner youth organizations

Asian Medical Students’ Association – UST
CAMP Volunteer Corps
College of Public Health Student Council
Fatima Biological Society
FEU-NRMF Medicine Student Council
Industrial Pharmacy Honor Society
Junior Medical Society
KIDS ART INITIATIVE
Meraquay Home-Philippines
Philippine Association of Nutrition – Alpha Epsilon Chapter (PUP Sta Mesa)
Philippine Association of Nutrition Alpha Omega Chapter (UP Los Banos)
Philippine Medical Students’ Association (PMSA-Our Lady of Fatima University)
PNU Student Volunteers’ Organization
Rotaract Club of Downtown Calapan
Rotaract Club of UP Manila
Social Action Medical Students Association – San Beda
The Eroteme (Cupang Senior High School, Muntinlupa City)
The UPLB Genetics Society
UP Sandigan (UP Manila)
UP Biological Sciences Society (UP Manila)
UP Biology Majors Association (UP Manila)
UP Medicine Student Council (UP Manila)
UP Pre-Medical Honor Society (UP Diliman)
Volunteer Youth Leaders for Health – Calapan City Chapter
Eduardo L. Joson Memorial High School – Red Cross Youth Council
Kythe-Ateneo
Volunteer Youth Leaders for Health ASIST Chapter
VYLH-University of Cordilleras
Alpha Mu Signa Phi (Cebu Institute of Medicine)
Asian Medical Students’ Association-WVSU
Colonia David Integrate School Supreme Student Government
CORE (Community Outreach, Resource, Education)
Cadiz West II Elementary School SPG
Eagle Scout Organization of the Philippines – Bacolod City Council Chapter
Highlight The Impact. Forward, Youth Volunteers. Inc.
Junior Philippine Pharmacists Association – Pi Chapter
Kabataan San Sidlangan, Inc.
La Consolacion College B Senior High School Government
Medical Exemplars Dedicated to Service (MEDS)
MICROBIA (WVSU)
Nursing Student Body Organization (NSBO)
Order of Asclepius (WVSU)
Red Cross Youth Council-Passi City Chapter
Senior High STEM General Biology Class
Silliman University Medical Students Association
SNNHS SHS Students Parliament
St. Anthony’s College Red Cross Youth Council
Surpreme Student Government-Passi NHS
UPV PH Pub (UP Visayas)
Biology Majors Alliance of the Philippines
Ideas Positive Alumni Community