Videocast of Presentation by Dr. Porter

Development of Therapeutic Interventions for
Niemann-Pick Disease, Type C1

Dr. Forbes "Denny" Porter of the National Insitute of Child Health and Human Development, National Institutes of Health, presented Clinical Center Grand Rounds at the National Institutes of Health on May 16, 2012. Dr. Porter's presentation was titled Development of Therapeutic Interventions for Niemann-Pick Disease, Type C1.

The NIH produced a videocast of Dr. Porter's presentation, and you can download or watch the video.  Visit the NNPDF's NewsLine page for more information and a link. 

Visit the NewsLine page often for the latest updates in news and research.  See also our Upcoming Events page for fun and worthwhile awareness and fundraising events being hosted all around the country, including the annual Ducks for Bucks family event coming up June 2.

Leap Day is World Rare Disease Day

Please Help Us Raise Awareness!

As we draw closer to World Rare Disease Day on Leap Day, February 29, we want to remind you that there are many simple ways you can get involved and help raise awareness and funding for those affected by rare diseases, including Niemann-Pick Disease.

One super-easy way to raise awareness is to right click the Rare Disease Day logo, copy it, save it, and use it as your Facebook profile photo.

Please visit the NNPDF's NewsLine page for more easy ideas to recognize Rare Disease Day and raise awareness for those who are affected by rare diseases the world over.

Making the Most of Your Visit to the NNPDF Web Site

If you've spent much time at the NNPDF Web site (http://www.nnpdf.org/), you probably know that the site serves as a vital, accurate and up-to-date source for information about Niemann-Pick Disease. The site is updated frequently and serves a worldwide audience, as evidenced by the ever-increasing number of contacts received by the NNPDF from around the globe.

While we strive to ensure the NNPDF Home page is user-friendly with links to the latest news and hot topics, the Web site has many pages and contains a great deal of information. To help you find the content you need and make the most of your visits to our site, we have put together a one-page document of tips. The article gives you tips on how to quickly search the site for a specific topic, and where to look for the latest news when you don't have a lot of time to spend.

Please visit our NewsLine page for a link to a PDF of the tips. We hope you find them helpful!

NNPDF Annual Board Meeting

Feb. 4 - 6, 2011
Milwaukee, Wisconsin

The NNPDF Board of Directors will gather this weekend in Milwaukee for the foundation's annual meeting, to recap the successes and lessons of the year past, and to finalize plans and reenergize for the year to come.

The board will welcome board member Kathy Lane to her first official meeting in this new role. Kathy was recently featured on Newzjunky.com, in an article about her involvement with the NNPDF and with raising funds and awareness for Niemann-Pick Disease. Two of Kathy's grandchildren are affected by Niemann-Pick Disease Type B. Visit the NNPDF's NewsLine page for a link to the article.

Meet other members of the NNPDF Board here. Please feel free to contact any board member or the NNPDF Central Office at any time if you have questions or suggestions, or if you need more information about any aspect of Niemann-Pick Disease of any type.