Did you know that an estimated 30 million Americans are affected by a rare disease?! Special challenges face those with a rare disease such as Niemann-Pick Disease, in getting a diagnosis, gaining access to appropriate treatment, finding support resources, and in advancing essential research. A disease or disorder is defined (in the U.S.) as rare if it affects fewer than 200,000 Americans at any given time.
|Alone we are Rare. Together we are Strong.
Rare Disease Day is an annual event, observed worldwide on the last day of February, to raise awareness of rare diseases as a public health issue. Groups around the globe are strategizing their advocacy and awareness efforts in support of World Rare Disease Day, to be observed Thursday, February 28, 2013.
The National Organization for Rare Diseases (NORD) is the sponsor of Rare Disease Day in the United States, and EURORDIS is the sponsor in Europe. The National Niemann-Pick Disease Foundation is a Rare Disease Day Partner with NORD, and we support the observance of World Rare Disease Day among our members.
Easy ways to show your support for all affected by rare diseases, including Niemann-Pick Disease:
- Share the Facebook event page from the NNPDF Awareness Facebook Group page highlighting Feb. 28th, 2013, as World Rare Disease Day.
- Join the NNPDF Blog. 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" 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 Thursday, February 28th in support of the Global Genes Project.
- Share your rare disease experience with others. Post links to the NNPDF site and the NORD site on your Facebook page to raise awareness of the plight of those affected by rare diseases.
- Make a meaningful impact and reach out to your local media by sharing your story, 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
|Five-year-old Johnathan Spencer (NPC) hams it up for the camera, raising awareness for the
5th Annual World Rare Disease Day.
2013 World Rare Disease Day Theme:
"Rare Disorders Without Borders! "
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 February 28th.
The Global Genes Project, creator of the "Denim & Genes" campaign, is a "Children's Rare Disease Campaign .... a grassroots effort with a simple goal: Increase awareness for the prevalence of rare diseases and help those affected by them. While each disease may be rare when considered by itself, together they negatively impact the lives of millions of children and adults."
Contact us at the NNPDF if you would like brochures about Niemann-Pick Disease to distribute to friends, family and co-workers to explain why you are wearing jeans in support of Rare Disease Day.
Visit the Denim & Genes page and NORD's Rare Disease Day site for more ideas about organizing an event to raise awareness and funds.
Join RDLA and 200 rare disease advocates in Washington, DC for Rare Disease Day – Week, February 26th – 27th 2013.
The Conference and Lobby Day are free and open to the public.
Families Raising Awareness for Niemann-Pick Disease
Around the World
Received from one of our families, with regard to their personal awareness-raising efforts:
We took part in the awareness campaign for rare diseases in Dubai, UAE. The government of UAE had organized this awareness drive and all the leading media partners supported the cause. Our son Adnaan, (NPC patient) took part in the awareness and his story was published in the newspaper. Adnaan is on Zavesca. We would like to thank the UAE government for this campaign.
Asif S. Master
Article from Khaleej Times Web site or as an MHTML file.
Article from GulfNews.com web site or as a PDF file.
[Mar 8th, 2013 blg]