Rare Disease Week 2017
National Rare Disease Week 2017
"Research brings hope to people living with a rare disease"
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.
#CareForRarePH
Social Media High5!
① Like the National Rare Disease Week - Philippines Facebook Page fb.com/RareDiseaseWeekPH
NATIONAL RARE DISEASE WEEK
② Update your Facebook and Twitter profile photo with the NRDW 2017 Twibbonbit.ly/NRDWtwibbon2017
In February 8, 2010, the last week of February was declared as the “National Rare Disease Week” in the Philippines through Presidential Proclamation 1989.
Since then, PSOD has taken the initiative to be the central coordinating organization for the rare disease awareness week campaign in the country—bringingtogether different healthcare institutions, local government units, government agencies, civic organizations, volunteer
organizations, media and other private and public institutions to be united in creating awareness and support for Filipinos with rare disease.
VYLH-Philippines, since its formation, has adopted the rare disease advocacy among its flagship advocacies and has been an active partner of PSOD in advancing and promoting the rights and needs of Filipinos with rare disease.
NATIONAL RARE DISEASE WEEK 2017
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.
The Philippine National Rare disease week culminates with the worldwide observance of Rare Disease Day every last day of February.
ABOUT THE THEME: With research, possibilities are limitless
Imagine what it would be like to live without answers to your most basic questions.
This is the reality for many rare disease patients. Research can lead to the identification of previously unknown diseases and can increase understanding of diseases. It can enable doctors to give a correct diagnosis and provides information to patients about their disease. It can lead to the development of new innovative treatments and in some cases a cure.
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
Last year, the NRDW Thunderclap obtained
124 supporters and a social media reach of 679, 322.
Social media reach is the accumulated total of the number of social media friends and followers of a campaign's supporters.
④ Upload your
"Raise your Hands for Rare" Photos
Send by message or post your photos to the
National Rare Disease Week Facebook Page
⑤ Official Hashtag: Use #CareForRarePH
in your posts and status updates
CALL FOR PARTNER YOUTH ORGANIZATIONS
The National Rare Disease Week Social Media Campaign is open to all interested youth organizations. Pleas see the files below and submit the reply form
on or before February 19, 2017.
NRDW 2017 Invitation to Youth Organizations
NRDW 2017 Social Media High5 Primer
Download the Compressed/Zip file NRDW2017.RAR
For more details, please email us at rarediseaseweekph@gmail.com or contact us thru the National Rare Disease Week Facebook Page.
CELEBRATING A MILESTONE
Last March 3, 2016, the Rare Diseases Act of the Philippines (RA10747) was enacted into law by President Benigno S. Aquino III. RA10747 provides a comprehensive national policy in addressing the needs of persons afflicted with rare disorders. The Implementing Rules and Regulations of the law is expected to be approved this year.
Learn more about the salient points of this important legislation at Youth for Health.
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