The Philippines will be celebrating the 8th National Rare Disease Week on 22-28 February 2017—joining hands with the rest of the world in the Rare Disease Day 2017 campaign focusing on orphan disorder research through the slogan “With Research Possibilities are Limitless”.
“Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care. On 28 February 2017, the tenth edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for more research on rare diseases. Over the last few decades, funds dedicated to rare disease research have increased. But it can’t stop there. Rare Disease Day 2017 is therefore an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.” (Rare Disease Day Info Pack 2017)
Thru our collective voice, we can advocate for:
• Research on a specific disease or across diseases
• Funding for research on rare disease
• Private-public collaboration on research for rare disease
• Patient participation in research
Research is key. It brings hope to the millions of people living with a rare disease across the world and their families.
Learn more about the Rare Disease Day theme at rarediseaseday.org
Celebrating a milestone: The Rare Disease Act of the Philippines (R.A. 10747)
Republic Act No. 10747 or the Rare Disease Act of the Philippines was signed into law in March 2016. The law seeks to “improve the access of patients diagnosed to have a rare disease, or patient highly suspected of having a rare disease, to comprehensive medical care and to timely health information to help them cope with their condition.” Read the full text
Join the Social Media High 5!
What you can do: Spread the WORD!
Here are some of the ways you can help to add your voice to the campaign during the National Rare Disease Week (NRDW) on Feb 22-28 (or even for the whole month of February!)
1. Like the National Rare Disease Week Facebook Page
Our goal is to reach 1000+ likes. Visit fb.com/RareDiseaseWeekPH
2. Support the NRDW Thunderclap
We need 100+ supporters in order for our common message to be published. Help us surpass last year’s 679,322 social reach. Visit bit.ly/NRDWthunder2017
3. Customize your profile photo with a twibbon
Get the twibbon at bit.ly/NRDWtwibbon2017
4. Upload your “Raise your Hands for Rare” photos
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!
Submit your photos through any of the following
– tagging the National Rare Disease Facebook Page
– posting your photos at the NRDW FB page with #CareForRarePH
– sending your photos as a message to the NRDW FB page
– Tagging @rarediseaseweek and adding #CareForRarePH in your uploaded photo
5. Add #CareForRarePH in your posts and status updates
Our official hashtag is our call to action, a call for better care for Filipinos with rare disorders because everyone has a right to life and a right to healthcare.
Suggested Posts and Status Updates
The following are some of the suggested status messages/post for NRDW 2017:
In the PHL, a rare disorder is any health condition that afflicts no more than 1 out of 20,000 individuals in the country #CareForRarePH
Besides the little information available,rare/orphan disorders are long-standing,progressive, disabling and life threatening #CareForRarePH
The last week of February (Feb 22-28) was declared as National Rare Disease Week thru Pres. Proc.1989 Let’s promote awareness #CareForRarePH
Nat’l RareDisease Week unites private & public institutions in creating awareness and support for Filipinos with rare disease #CareForRarePH
Research is key. It brings hope to the millions of people living with a rare disease across the world and their families #CareForRarePH
Rare disease research is crucial to providing patients with the answers they need – diagnosis, treatment, or improved care #CareForRarePH
Rare disease research changes the lives of the millions of people living w/ rare disease across the world and their families #CareForRarePH
Information is key to improving living conditions for rare disease patients. raising awareness is one of our primary goals #CareForRarePH
Last March 3, 2016, the Rare Diseases Act of the Philippines (RA 10747) was enacted into law #CareForRarePH
Download NRDW Materials
Print banners and posters and display it in your office bulletin boards, hallways, and other ‘high-traffic’ areas so more people will know about it. Fansign templates are also available.
Download editable files from bit.ly/NRDWtemplates2017
You can also play PSOD’s “Lalaban Kami” music video for public viewing. Access the file thru Youtube
Be a #CareForRarePH Social Media Partner Organization
Interested organizations may download materials for organization accreditation at bit.ly/NRDWpartners2017
The PSOD will issue a certificate of participation to all social media partner organizations.
Should you have any question or clarification, please don’t hesitate to contact the National Rare Disease Week social media secretariat at firstname.lastname@example.org or email@example.com