Join us and be part of National Rare Disease Week 2019 #CareForRarePH

 

The annual observance of National Rare Disease Week (NRDW) and World Rare Disease Day provide an opportunity for policy makers, healthcare professionals, patients, support groups, and the public to unite and support the cause of rare disease patients in the Philippines and the world.

This year, NRDW and Rare Disease Day will be focused on the theme, “Bridging Health and Social Care: Show Your Rare, Show You Care”. The theme highlights the need to bridge the gaps in coordinating medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.

This year, the Philippine Society for Orphan Disorders invites everyone to support the #CareForRarePH campaign online through social media, and on the ground. In addition to the national hashtag, the hashtag #ShowYourRare will also be used in solidarity of the global campaign for Rare Disease Day.

The following are the ways that offices, organizations, informal groups, and individuals can join this year’s campaign:

  • Post it! Post about National Rare Disease Week on your website and social media account.
  • Shout it! Print banners and posters, and display them in your office entrance, bulletin boards, hallways and “other high-traffic areas”.
  • Play it! Download and play the campaign anthem, PSOD’s “Lalaban Kami” for public viewing.
  • Wear it! Schedule a blue denim jeans day or wear denim ribbons on February 28.

Social media will also be an important component of this year’s campaign. We invite everyone to share campaign posts and updates found in our official social media pages and join us by:

  • Supporting the campaign by “like-ing” the PSOD Facebook page (facebook.com/psod.org.ph) and the dedicated NRDW page (facebook.com/rarediseaseweekPH)
  • Updating your personal and organizational pages by uploading this year’s social media cover photo. Profile photos can also be updated using the NRDW Facebook frame.
  • “Show Your Rare”. Paint your face with face and take a pic! Paint your face or apply a temporary sticker tattoo and share the photo using the hashtag #ShowYourRare in solidarity with people across the world who are living with a rare disease. You can do it with your officemates and barkada. (NRDW Sticker Tattoo Guide)
  • “Raise Your Hands for Rare”. Take a photo, selfie or groupie with your hand/s raised! Raising your hands for rare means you are adding your voice to the call for better support for Filipinos afflicted with rare diseases. You can add a fan sign for rare if you can.
  • Support PSOD’s Sewing the Seeds from your #JEANerosity Livelihood Project by purchasing various denim products like envelope bags, tablet cases, cosmetic cases and coin purses. Visit our online shop and order online (bit.ly/psodrareshop). Share your purchase in social media with a photo.

In order to gather all of the social media posts, and contributions to the campaign, we encourage everyone to use the campaign hashtags #CareForRarePH #ShowYourRare in their posts, or tag the NRDW Facebook Page @RareDiseaseWeekPH, or send their photos to our page as a direct message.

For interested youth groups, the call for partner youth organizations for this year’s social media campaign is already open. Visit bit.ly/NRDWYouthApp2019 for the online registration form and details.

For more information and partnerships, you may reach the PSOD by email (info@psod.org.ph) or through our Facebook page (facebook.com/psod.org.ph)

With your help, we can raise awareness and increase public support for Filipinos with rare disease. “Show your rare. Show you care”

LINK: Download the NRDW2019 Info Kit and NRDW 2019 Campaign Materials