VYLH-Philippines celebrates Rare Disease Week 2014: Join Together for Better Care

WHAT IS A RARE DISEASE?

A rare disease, otherwise called an orphan disorder is any health condition resulting from genetic defects that afflicts no more than 1 of every 20,000 individuals in the country. Rare disorders afflict babies in all socioeconomic levels. Besides the little information available about their nature, what makes dealing with rare disorders even harder is that they are long-standing, progressive, disabling and life threatening.

WHY A RARE DISEASE DAY?

We constantly need to raise awareness on rare diseases among decision makers, health professionals and the general public.

Information is key to improving living conditions for rare disease patients; raising awareness is therefore one of our primary goals.

Read  more: VYLH-Philippines Primer to the Annual Rare Disease Week Celebration

VYLH-Philippines Rare Disease Day 2014 Activities

About the 2014 Theme: CARE. Join Together for Better Care 

Caring for people living with a rare disease has many facets.Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others require intensive physical assistance and equipment. Care can consist of medicines, products and devices, expert medical consultation, physical therapy, social services, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members. 

Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to Join Together for Better Care. Patients and their families who feel isolated by the rarity of their disease should know that there are more than 6000 different rare diseases affecting over 60 million people across Europe and North America alone and millions and millions more throughout the world. Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Joining together can help patients and their families find common solutions for care and remind them they
are not alone.

The theme for 2014 highlights that the many different facets of rare disease care represents a universal need for patients and their families around the world. Advocating at the local and national level to improve the lives of people living with a rare disease and their families is necessary. Considering rare diseases from an international perspective is also essential in order to send a strong message of hope to the millions of rare disease patients and families throughout the world who can break their isolation through a vast, united international network of solidarity.

This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need.  

Link: 2014 Rare Disease Week Information Kit (PSOD)

Social Media

VYLH-Philippines is inviting everyone to change their Social Media (i.e. Facbook, Twitter etc.) profile picture to the logo provided by the Philippine Society for Orphan Disorders.

NCR-South Luzon Cluster

• Radio plugging for the National Rare Disease Week and World Rare Disease Day activities at DZIQ with Mrs. Cynthia Magdaraog of PSOD (February 23 c/o Robin Charles Ramos)
• Talk on Rare Disease and VYLH-Philippines Advocacies at Los Baños National High School (VYLH-UPLB)
• Video Shoot for Rare Disease Advocacy Promotional Video (February 25, VYLH-UPLB)
• Opening of three-day exhibit at the Institute of Biological Sciences, UP Los Baños (February 26, VYLH-UPLB)
• Posting of posters at the National Institutes of Health, UP Manila and Institute of Biology, UP Diliman and support gathering using a post-your-photo wall (NIH UP Manila, MS Genetic Counseling students).
• Participation to the PSOD Rare Disease Day Group Hug and Globe lighting at the SM Mall of Asia Globe (February 28)
• Talk on Expanded Newborn Screening Program (February 26, VYLH-UPLB)
• Distribution of Denim Ribbons at UP Manila and PGH (February 28)
• Distribution of Advocacy Stickers and Denim Ribbons at UP Los Baños (February 28, VYLH-UPLB) 
• Distribution of Denim Ribbons and Newborn Screening brochures at Quezon City Memorial Circle in cooperation with CHD-NCR during the simultaneous organ donation sign-up and Guinness bid of the DOH and NKTI (February 28, VYLH-UPD)
• Advocacy promotion at Avalon Edunet Plus (Christine Querubin)

Visayas Cluster

• Exhibit at the Silliman Univeristy Library (Dumaguete City)
• Advocacy promotion and bulletin board posting at Mastercraft Inc. and RODECH Training Services Lin Int'l Inc. (Jane Alcomendras)
• School-to-School  advocacy campaign at Cherubs Academy Inc., and Luray II Elementary School, Toledo City, Cebu (Jane Alcomendras)
• Rare Disease Advocacy Information campaign at Consalatrix College, Toledo City Cebu (Jane Alcomendras)
• Posting of Rare Disease Week tarpaulin at West Visayas State University College of Medicine (Camillie Potato)
• Rare Disease Day activities at University of Bohol (Phoebe Sheila Inting)

Mindanao Cluster

• Denim Ribbon distribution Mindanao State University College of University (Week-long, MSU-College of Medicine class of 2017/Mench Pamanay)
• Exhibit and Advocacy campaign at Father Saturnino Urios University in Butuan City (Week-long, Butuan City Volunteers)
• Display of Rare Disease Week advocacy at the JingLong LED Billboard in Butuan City (VYLH-Philippines Butuan City with the help of Butuan City Health Office)
• Rare Disease Day activities at the following locations:
• E&G International English Academy (Shane Paul Baula)
• Butuan City Health Office (VYLH-Philippines Butuan City)
• Ampayon Main Health Center (VYLH-Philippines Butuan City)
• Llanos Medical Clinic and Hospital, Digos City, Davao del Sur (Ram Cossid)
• Mountain View College in Valencia, Bukidnon (Plendy Catalan)

Updated 01 March 2014