On the ultimate rare day---February 29th---millions of people around the world will be observing Rare Disease Day. Patient organizations, government agencies, research centers and companies who have signed up as "Rare Disease Day Partners" (including the CCNNPDF/NNPDF), will join in supporting the day!
"This year marks the 5th anniversary of Rare Disease Day," said Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD). "The event has grown every year and was observed in more than 60 nations last year. The purpose is to raise awareness of rare diseases as an important public health issue."
Across the world, patients and their families will share their stories. Rare Disease Day Partners will host special awareness events and activities. And, all over the world, supporters will be voicing the same themes:
- Rare diseases affect millions of people.
- Getting a diagnosis is difficult and often takes many years.
- Most rare diseases have no treatment.
- Many rare diseases are not being studied by medical researchers.
- More than half of the patients are children, and rare diseases tend to be serious, complex and chronic.
"In addition to articulating the challenges, we'll be celebrating the partnership that exists between patients and those seeking to help them," Saltonstall said. The global theme for Rare Disease Day 2012 is "Solidarity."
In addition to national activities and events in each participating country, the day emphasizes global collaboration with each country reporting its events on a global website.
Alone we are Rare. Together we are Strong. |
Easy ways to show your support for all affected by rare diseases, including Niemann-Pick Disease:
- Share the Facebook event page from the Niemann-Pick Disease Awareness Facebook Group page highlighting
Feb. 29th, 2012, as World Rare Disease Day.
- Join the NNPDF Blog http://npdf.blogspot.com/. Sign up for the RSS feed ("Subscribe via Feedburner" at the blog) to receive an email notice when the blog is updated.
- Use "Good Search" ( http://www.nnpdf.org/aboutus_22.html ) as your internet search engine. Each search conducted triggers a one cent donation to the NNPDF -- all those pennies added up to $250 last year!
- Add eBay Giving Works (Mission Fish) to your eBay seller's site and make a donation to the NNPDF for each sale made - you set the percentage.
- Sign up to be a Rare Disease Day Ambassador and use RDD logos on your Facebook page, blog, etc.
- Wear jeans to school or work on Wednesday, February 29th, in support of the Global Genes Project.
- Share your rare disease experience with others. Post links to the CCNNPDF site and the CORD site on your Facebook page to raise awareness of the plight of those affected by rare diseases.
- Make a meaningful impact by writing letters to your government representatives, bringing their attention to rare diseases and related needs such as research.
- Distribute PERSEVERE wristbands to your family and friends to wear in a sign of solidarity in the battle against Niemann-Pick Disease and all rare diseases. Order form
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Five-year-old Johnathan Spencer (NPC) hams it up for the camera, raising awareness for the
5th Annual World Rare Disease Day. |
2012 World Rare Disease Day Theme:
"Solidarity -- Rare but Strong Together"
Visit http://www.rarediseaseday.org/ and http://rarediseaseday.us/ for more information and ideas on how you can raise awareness of Niemann-Pick Disease on Leap Day, February 29th.
Niemann-Pick Disease Type C to be Spotlighted at NIH Rare Disease Day Event
Denny Porter, M.D., Ph.D., of the National Institute of Child Health and Human Development (NICHD), NIH, together with Mark Kao, Ph.D., of Johnson & Johnson, and John McKew, Ph.D., of Therapeutics for Rare and Neglected Diseases (TRND), NCATS, NIH, will speak about the upcoming cyclodextrin trial for NPC at a Rare Disease Day event being hosted at the NIH.
The day-long event will recognize rare disease research activities supported by several government agencies and advocacy organizations.
Attendance is free and open to the public and the media, and pre-registration is encouraged. In association with the Global Genes Project (a grassroots effort to use jeans to raise awareness for rare genetic disorders), organizers urge all attendees to wear their favorite pair of jeans.
For more information about the Rare Disease Day event at NIH, read the NIH press release.
See the full agenda and register for the NIH event via links at http://rarediseases.info.nih.gov/RareDiseaseDay.aspx.
For more information about the TRND project and the upcoming cyclodextrin trial, visit our special page.
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