Show Your Support for Those Affected by Rare Diseases Such as Niemann-Pick

Monday, February 28, 2011, is World Rare Disease Day



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, 2011, as WORLD Rare Disease Day.

•Sign up for the RSS feed for this blog ("Subscribe via Feedburner") 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.

•Support the 10th Anniversary of Spain's NPD Foundation (Fundacion Niemann Pick de Espana) by visiting their Web site on February 17th, as part of a fundraising effort based on the number of site visitors.

•Wear jeans to school or work on Monday, 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 by writing letters to your congressional representatives asking them to join the Rare and Neglected Diseases Congressional Caucus. The Caucus will focus attention on 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.

Visit the World Rare Disease page at http://www.nnpdf.org/ for more details and ways to show your support of those affected by rare diseases.

Rare Disease Day - February 28, 2011

"Alone we are Rare,
together we are Strong."

The National Organization for Rare Diseases (NORD) will celebrate Rare Disease Day on Monday, February 28.

This year’s worldwide theme is “Rare but Equal” which will highlight “Rare Diseases and Health Inequalities.”

A disease or disorder is defined as rare in the USA if it affects fewer than 200,000 Americans at any given time. Thirty million Americans are affected by rare diseases, including those affected by Niemann-Pick Disease.

Join hands with others around the world, and get involved in raising awareness of rare diseases. Please visit the NNPDF NewsLine page for more information and links to videos and stories of those whose lives are affected by rare diseases.

Institute of Medicine Releases Report on Rare Diseases

The Institute of Medicine (IOM) recently released a report calling for implementing an integrated national strategy to promote rare diseases research and product development.

The report, Rare Diseases and Orphan Products: Accelerating Research and Development, is the result of a two-year study commissioned by the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).

To read the full report, visit the NNPDF's Latest Research page and click the link.

One Child's Journey through Niemann-Pick Disease

One Child’s Story Through Niemann-Pick Disease Type C

Stacey Lynne Vorpahl (NPC)
January 3, 1985 – October 9, 2004

In loving memory of Stacey and all the other precious children lost to NPD, and in honor of those still struggling, please join with us in our Quest for a Cure. Follow the link to view Stacey's story, as told by her parents in text and photos.

10 – 10 – 10 Challenge
Please Help Raise Awareness for Niemann-Pick Disease

Meet the NNPDF's 10-10-10 Challenge and take at least one simple action on October 10,2010, to spread the word about this devastating disease.

Thank you for your help and support, on 10-10-10 and always!